Me, In Front Of The Camera (Yikes!)

(For those receiving this via email, this post contains a video which can be viewed at the Wheelchair Kamikaze website – click here)

As is evidenced by the Wheelchair Kamikaze videos and photos that are part of this blog, I’m very comfortable behind a camera. In front of a camera, though, not so much. This might seem strange given the fact that I don’t have much of a problem “revealing” myself through my writing, and I’m not exactly a shrinking violet, but I usually react like I just got too close to the tail end of a flatulent moose when viewing images of myself or hearing recordings of my voice. Many so-called primitive cultures believe that capturing a person’s image or voice steals a bit of their soul, and on the off chance that they’re right I’d much rather be the thief than the thieved. You can never have enough soul whether you're talking about things mystical or musical, and anyone who knows me can tell you that I just can’t get enough of that funky stuff. Holla!

Be that as it may, last summer I was contacted by a producer from the website EverydayHealth.com (click here), who wanted to know if he could put together a video for the site featuring me and my blog. As an added incentive, I was told that I’d be interviewed on camera by none other than Dr. Sanjay Gupta, a famous doctor and television personality who makes numerous appearances on CNN, CBS, and other media outlets. Dr. Gupta is also a practicing neurosurgeon, which further piqued the interest of this “atypical” MS patient. Additionally, I was told that Everyday Health wanted the video to include my lovely wife Karen, who deserves as much praise and credit as can possibly be heaped upon her. So, given this ever enticing witch’s brew of enticements, how could I say no?

Shooting the video took two days, or eight months, depending on how you look at it. Late last August – on my birthday, as luck would have it – Karen and I met Dr. Gupta and his video crew in lower Manhattan near Wall Street, where the good Doctor interviewed me as we walked/rolled along the city streets, talking about what it's like to use a power wheelchair in the crowded metropolis. Since time was short, we made plans to finish the video sometime in the next few weeks. My big fat rat bastard of a disease then reared its ugly head when I had a bizarre and totally unexpected reaction to a medication called Acthar Gel, which had me laid up in bed until the end of November (click here). By that time winter had set in and we decided to put off finishing the video until better weather arrived in the spring. Shooting was finally completed in May, and Everyday Health posted the edited video and a much too kind accompanying article on their Internet site a few weeks ago (click here).

Despite the fact that I may have lost a few bits of soul to the production, I think the Everyday Health crew did an exceptional job on the video and the written piece that goes along with it, the combination of which had me blushing for days. I’d like to give my heartfelt thanks to Dr. Sanjay Gupta, producer/writer Nils Kongshaug, and videographer/editor Michael Bush for doing such a bang up job on the entire production. Truly, I am not worthy (but Karen is)…

And so – drumroll, please – here’s Everyday Health’s Wheelchair Kamikaze video…

Must Watch TV – "When I Walk" Airing Monday, June 23

Last year I wrote about a remarkable MS themed film called When I Walk that was making the rounds of local film festivals. In part funded through a Kickstarter crowdfunding campaign, When I Walk proved to be a tremendous success, winning numerous awards and garnering impressive critical praise (click here and here). Though the documentary saw some nationwide and worldwide distribution, it was screened at only a relative handful of theaters, preventing it from being seen by the widespread viewership it so richly deserves. On Monday night, June 23, When I Walk will finally get its chance to reach the masses here in the United States, with a television debut on the PBS series "POV" (click here). In the New York City metropolitan area, the film will air at 10 PM, please check your local listings for air times in your area. When I Walk will also be available for viewing online from June 24, 2013 to July 23, 2014. (Update: seems that the film will be showing on different days in different cities. Please click on the "POV" link, above, to check when When I Walk will be shown in your local area. I've also learned that many Canadian locales also get PBS, so WK readers in Canada should check their local listings.)

When I Walk is the work of Jason DaSilva, a young filmmaker whose previous films have been featured at film festivals around the world. About nine years ago, at the age of 25, Jason was struck with progressive MS and decided to turn his camera on himself. His documentary When I Walk chronicles the first seven years of his struggle with PPMS in unflinching fashion, showing the effects of the disease warts and all even as it exposes the heart and soul of the man at the center of the storm. When the film opens, Jason is having some trouble walking; by its end he’s using a scooter full-time, his vision is increasingly affected, and the disease is attacking his hands to the extent that he needs help completing the movie. In between, we experience the physical and emotional roller coaster of MS as Jason searches for answers, possible cures, and even miracles. Though one might think this would make for gloomy subject matter, the film is an inspiring testament to Jason’s courage, the power of love, and the enduring nature of the human heart. Even as Jason’s body betrays him, he manages to find his soulmate, a woman special enough to love him despite all of the trepidation and uncertainties that come with MS.

Unlike the usual public face of MS, which typically features MSers climbing mountains or celebrities with MS "dancing with the stars", When I Walk gives us an unvarnished view of the realities of multiple sclerosis, a picture of the disease rarely seen by the public at large. For that alone the film deserves heaps of praise; the fact that When I Walk manages to inspire and illustrates the strength of the human spirit despite never shying away from the uncomfortable facts of life with progressive MS is testament to the artistry of the filmmaker, and makes the film "must watch" material for those both inside and outside of the MS community.

Here’s the When I Walk trailer:



It'd be terrific if Wheelchair Kamikaze readers left their impressions of the film in the comments section of this post…

The Great Pretender

(For those receiving this via email, this post contains a video that can be viewed on the Wheelchair Kamikaze website-click here)

Yes, I'm the great pretender
Just laughin' and gay like a clown
I seem to be what I'm not, you see
I'm wearing my heart like a crown
– “The Great Pretender”, the Platters, 1955

It’s strange when a phrase or quote that you’ve long known takes on new meaning due to changed circumstances. Such is the case for me with the lyrics of “The Great Pretender”, a song made famous by the doo-wop/R&B group The Platters in 1955. The tune has long been a part of the playlist in my brain. As the song goes, “yes, I’m the great pretender…”, only now I’m pretending in ways most likely never imagined by the lyricist.

A few weeks ago I had a late lunch with a fellow MSer in a famous restaurant nestled on the outskirts of Central Park called Tavern on the Green. We ate underneath an umbrella in the outdoor patio portion of the newly refurbished eatery, an idyllic spot on a glorious spring afternoon. My friend has a sharp wit and is wickedly entertaining, and she and I whiled away several hours lost in conversation and good food. Our chat ranged far and wide, but, as might be expected from two people dealing with multiple sclerosis, the topic of our shared foe came up at regular intervals, not in any maudlin way but more as the subject of information exchange and the occasional sarcastic verbal jab.

While we ate, me in my wheelchair and my friend with her cane resting beside her, the rest of the world buzzed around us, for the most part as oblivious to us as we were to it. Insulated in our own little bubble, we conjured an atmosphere of normalcy despite our abnormal physical situations, just a couple of gimps jabbering away, all the fleet footed and nimble fingered be damned. After lingering for quite a while, we finally finished our meal, paid the tab, and wheeled (me) and limped (her) our way out of the establishment, where we’d pleasantly spent a very rich few hours.

Just a moment or two after exiting the restaurant, though, my friend suddenly burst into tears.

“What’s wrong?” I asked, naturally alarmed.

“Look!” she sobbed, pointing at the broad inner roadway that circles the circumference of the park, which had become a blur of joggers and bicyclists. “I can’t do that anymore, and I want to.”

Our bubble had been burst and harsh reality rushed in to fill the vacuum. Crap. I felt a black hole tearing at the center of my soul. I reached my one good but weakened hand out to hold hers and hesitantly stammered, “I know… I know." Hackneyed platitudes dressed up as words of wisdom just weren’t going to cut it. This great pretender could do nothing more than share the hurt.

Though I like to think that I have successfully mastered the mantle of noble warrior, steadfastly staring into the eyes of the beast that is my creeping paralysis without any cloak of self-delusion, the plain truth is that in the years since my diagnosis I’ve become well practiced at the art of illusion, wielding psychic shields to protect myself from the sharper and sharper barbs of my increasingly dire situation. I guess this is only natural, a survival mechanism hardwired into our brains to help us cope with even the most dreadful of circumstances. Denial may be one word for it, but I think it’s more a subconscious reshaping of reality than a refusal to see things as they are, a sculpting of perception to create a much-needed psychological zone of comfort and safety. Of course, reality is always in the eye of the beholder, cross your peepers hard enough and even the most cockeyed of situations can appear straight as a desert highway.

Safe in the cocoon of my apartment, my increasingly dysfunctional existence has indeed become “normal”, the countless allowances made to the ravages of the disease rendered commonplace over time. Living with progressive MS is an exercise in constant adaptation; with incremental losses come a never-ending series of incremental workarounds. The disease has slowly left me with a right side that is completely on the fritz and a left that is continually weakening, transforming once mundane tasks into exercises in ingenuity and tenacity.

Sheltered within the cozy confines of my sanctuary here on the 18^th floor of my high-rise building, all of the crazy workarounds and elaborate but clumsily choreographed routines that get me through the day seem almost ordinary. Within these walls my rather bizarre life has become the norm, allowing me the luxury of just being me, warts and all, negating any need for pretending. Sure, there are times throughout even days spent entirely alone at home when I’m hit with “holy shit, I’m a cripple” moments, instants awash in incredulity, but by and large, left to my own devices, I can relax and be myself in the self-contained topsy-turvy MS riddled world of home.

The Great Pretender springs into action once I venture out into the world, where reminders of my mangled reality are everywhere. It starts the moment I leave my apartment. Waiting for the elevator, I sit in my chair hoping beyond hope that when the doors open the car will be empty, saving me the spectacle of watching my fellow building dwellers scramble out of the way of my mechanical monster, my oh too cheerful apologies mixing with their forced graciousness in a perfect illustration of the human capacity for polite bullshit. Once out of the elevator I watch my instantly effervescent doorman rush to open the building’s doors wide for me.

“How are you today Mr. Stecker?” he asks just a little too enthusiastically.

“Better than those goddamned Mets,” I respond, and then we both force a laugh (for those blessedly unacquainted with The Mets, they are New York’s notoriously pathetic baseball team). In truth I appreciate these attempts at perfunctory pleasantries, while at the same time resenting the fact that I require added attention. And then it’s out into the bustling metropolis, where The Great Pretender kicks into high gear.

I love the city, I love being out in the city, but Gotham’s very nearness and dearness to my heart exposes that fragile little organ to the slings and arrows of my outrageous misfortune. All around me there are people doing wondrous things, walking and jogging and climbing stairs, driving and texting and holding hands, all with effortless grace and dexterity. They’ve no idea how lucky they are, just as I didn’t when I was so incredibly fortunate to be one of them.

Ass firmly planted in chair, I take on various roles as I roll through the town: observer, photographer, crazy Wheelchair Kamikaze, speeding through the streets so as not to let envy catch up and turn me green as a Martian. Shields up I deflect whirlwinds of emotion, psychological tornadoes shunted aside by the storm shelter of the Great Pretender. I honestly enjoy careening around the sidewalks of New York, though as my “good” arm and hand continue to weaken even that pleasure is becoming blunted. Still, there’s plenty to occupy the mind while at the controls – don’t hit that pothole, sure hope that pigeon is quick to the wing, watch out for the precocious scooter kid!

Once I arrive at my destination, other concerns take hold as there’s less to distract me from the facts of my broken down state. If I’m out for a jaunt by myself, say to the park or to the river, I mindfully try to soak up the scene and not let my sense of otherness overwhelm and ruin the moment, not always easy but doable while alone and left to my own devices. Things change in the company of healthy friends or family, when I somehow feel responsible for keeping them at ease with the situation, almost automatically conjuring a sense of nonchalant joviality that belies the gravity of my predicament. The Great Pretender wears thin armor and a welcoming smile.

What a great attitude, others sometimes marvel, even as I sit secretly coveting not only their hale bodies but also the problems that occupy their hearts and minds. Is that a horrible admission, that I’m jealous of the very same issues that often had me tied up in knots back in my healthy days? Problems that could be solved either through action, a change of mindset, or simply the passage of time? This implacable illness has no such solutions, thus far defying every effort to even just slow it down. Barring some incredible medical breakthrough, these are wounds that time won’t heal but in fact will only make worse, a truth I hardly want to admit to myself much less discuss with anyone else, other than the closest of the close.

As my disease progresses, maintaining psychic equilibrium in social settings requires more and more conscious effort. It’s hard to get lost in dinner conversation when your increasingly gimpy hand has trouble manipulating a fork. Such social outings are double-edged swords; they offer much-needed distraction and social interaction while at the same time putting a focus on just how much I’ve lost to this slowly exploding atomic bomb. My efforts at illusion aim not only to comfort others but myself as well. The approximation of “situation normal” that The Great Pretender endeavors to maintain is a way of breathing life into the me that used to be, the embers of which I’m afraid are slowly being doused. It’s good therapy to get lost in the occasional game of make-believe, but gosh it can be exhausting when the illusion is so easily shattered, when all that used to be taken for granted sits balanced on a razor’s edge, when looking down reveals an emaciated right hand curled into a claw. A physical and psychological juggling act of increasing complexity, socializing with friends has its rewards but also it's price. I usually find myself totally spent after such activities, needing days to recharge.

When I’m out with fellow MSers, it’s a somewhat different story. Regardless of the stage of their disease we share a common burden, and that sharing helps to lessen the load. Members of an exclusive club that none of us wanted to join, we speak a language that outsiders would at times be hard-pressed to understand. Even out and about in the great big land of the healthy a couple of gimps can carve out a world within a world. It can be exhilarating to talk about the ugliness of MS with someone else who just gets it, no explanations necessary. Speaking of things that to others might seem unspeakable can be a tremendous relief, a chance to purge and breathe deep. This sense of sharing creates its own temporary normalcy, and yet, as was the case with my friend as we left Tavern on the Green, the outside world has a way of shattering even collective illusions.

In a sense we are all The Great Pretender, revealing different sides of ourselves to different people, wearing different faces in different situations. In part, we choose our friends and lovers based not only on who they are but on the person they allow us to be. Chronic progressive illness digs deep, throwing a mass of new variables into the equation, increasing exponentially the complexity of the elaborate social dances in which we all engage. As the disease takes hold fundamental changes take place, not only physical but mental, changes visible and invisible that can be so traumatic that they shake our foundational notions of self. Protectively and instinctively I insulate body and mind, creating pockets in which my new decidedly not normal becomes normal, but the world outside still beckons, the company of others still calls. Though beyond the comfort zone lays the potential for peril, I venture forth with a spirit – at once both real and contrived – intended to bolster myself as much if not more than others.

And so yes, I’m The Great Pretender…

Remembering Robert Kennedy

Image via Wikipedia

(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted five years ago, in 2011. Given the current ruinously cantankerous political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this post is as relevant today as it was 46 years ago, and should be taken to heart by those of all stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website – click here)

I am a man with few heroes.

It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 48 years ago today.

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable gossip hungry media. Back then, there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been achieved. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against social injustice and for the weak and disenfranchised.

Robert Kennedy started his political career working in the office of the now justifiably defamed Senator Joseph McCarthy, who at the time was in the midst of his vile early 1950s anti-Communist witchhunt which resulted in the destruction of the reputations and lives of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis.

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968.

Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of America one can only imagine that the arc of history might very well have been much more benign than the reality that ultimately came to be. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss.

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and likely unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination.

Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…



Rest in peace, Bobby Kennedy.

To Work or Not to Work – Employment and MS

(For those who receive these posts via email, this essay contains videos which can be viewed on the Wheelchair Kamikaze website – click here.)

Multiple sclerosis can be a wrecking ball of a disease, its potential effects threatening to impact virtually all aspects of life. Though the newest MS therapies offer many patients the hope of extended periods of good health, MS sufferers nevertheless find themselves constantly adapting to the challenges thrown at them by the disease. In addition to obvious problems such as those related to mobility and coordination, other more invisible symptoms can be equally problematic. Cognitive difficulties and extreme fatigue can be just as crippling as weakened and numbed extremities. Relapsing remitting patients never know if and when the next attack is going to hit; progressive patients must learn to coexist with their illness as it carries them down a slope of ever-increasing disability. The stress and uncertainty of chronic illness adds exponentially to the already demanding nature of modern life.

MS strikes most of its victims when they are relatively young, well before most would ever otherwise consider leaving the workforce and retiring. Unfortunately, MS forces this issue for significant numbers of those it afflicts. Despite the sunny image of MS often portrayed in the media, numerous surveys and studies have found that a high percentage of MSers find themselves forced into early retirement by the disease (click here, here, and here). Surprisingly, studies conducted in Europe discovered that as many as 50% of people with MS stopped working within five years of their diagnosis, well before many of them manifested obvious signs of physical disability. Instead, cognitive issues (such as memory issues and “brain fog”) and fatigue led many to early retirement. The findings of some of these studies may not be entirely accurate today as they include information on patients who became ill before the current crop of more effective therapies became available; nevertheless, MS related employment issues are a reality with which those afflicted with MS continue to grapple.

The prospect of lost jobs and reluctantly terminated careers can be one of the most frightening aspects of the disease for working MS patients. We live in societies that often conflate what we do for a living with who we are, and many find their sense of self intimately entwined with their work life. In addition to the obvious worries the potential financial impact of leaving the workplace can engender, the psychological toll of merely anticipating such an eventuality cannot be overstated. Patients often fear the loss of their jobs as much as the potential physical deterioration associated with the disease, and many hang onto their jobs for dear life, a sense of failure accompanying any ruminations of quitting the workforce.

I suppose in a strange way I’m lucky that I never felt wed to my career. Despite the fact that I managed to be successful in a highly competitive industry (TV and video production), I always felt some dissonance between who I was and what I did, as if I had strayed from my path and could never quite find my way back. Truth be told I just never loved working, least of all in some of the highly corporate environments in which I found myself toiling during some points of my career. There are those who thrive within the structure of a buttoned-down business environment; I felt as if I was being slowly suffocated. I enjoyed the titles associated with my working life (Producer, Director of DVD Production) much more than I actually liked the nuts and bolts of the jobs themselves.

Compared to many other patients, my disease struck hard and fast. My last day of work came less than four years after my official diagnosis. As my initial symptoms were all physical (increasing paralysis of my entire right side) and soon became abundantly obvious to all but the least observant, I made no attempt to hide my condition from my employers, who were gratefully quite sympathetic and supportive. They allowed me flexibility in my working hours and never gave me grief about time taken off for doctors’ visits or treatment sessions. My decision to go on disability was practically made for me, as the facility in which I was employed appeared threatened with closure and those in charge gave me fair warning that I could lose my generous disability benefits should the place shut down. Though I held on as long as I reasonably could, my creeping paralysis eventually made simply getting to work completely exhausting, never mind the physical toll of working a full day, and when the end came I felt more a sense of relief than anything else.

I spent the first two weeks of my “retirement” in full recovery mode, my body and mind finally able to take a few deep breaths, and though I did go through a time of existential uncertainty, I adapted quite well to my enforced life of leisure. At times I absolutely reveled in my newfound freedom to do whatever I wanted when I wanted to do it, albeit within the confines imposed by my illness. The support of my ever indulgent wife was (and is) beyond value, as I used my newfound liberty to pursue interests and penchants that had long lain dormant or ignored. Though some of the time since I left work has been spent on activities the less enlightened might deem frivolous (like watching lots of zombie flicks), some of my other endeavors hopefully have had some socially redeeming value (like this blog). Even now, with the grip of my illness growing ever tighter, I’m quite happy to be gainfully unemployed. Can’t say I’m having as much fun as I did earlier in my retirement, but freedom is precious whatever the cost.

I’m very much aware that my experiences leaving the workforce – from the days preceding my retirement to those after it – are hardly typical, but I’m living proof that the transition need not be filled with trauma and woe. Certainly, those with a deep affection for their work should be rightfully loath to give it up, and for many, even those with obvious disabilities, forced retirement can be held at bay for quite a while, perhaps even indefinitely. There are strategies and methods that can be used to prolong employment, particularly if employers and colleagues are made aware of the situation and cooperate in the effort.

Many wrestle with whether or not to disclose their illness in the workplace, and this decision can be highly dependent on the nature of the work as well as the culture and environmentin which the patient is engaged. A recent study found that those who do disclose their multiple sclerosis are more likely to remain working longer than those who do not (click here). Almost all developed countries have laws prohibiting discriminating against disabled employees, and require that employers make reasonable accommodations for those with disabilities. Once disclosure has been made, the psychological burden of keeping an illness secret is lifted, and that alone can ease the grind of getting through the day. Working hours can be made flexible, responsibilities can be shifted, and telecommuting can be a viable option for many. One of my good MS friends is a lady who relies on a power wheelchair to get around but nevertheless remains successful at her media sales position through a combination of fierce tenacity and the accommodations she’s worked out with her employer. A terrific resource for learning about employment accommodations for the disabled is the Job Accommodations Network website (click here).

Regrettably, not all working MSers are able to remain employed indefinitely. The decision to finally leave work can be one of the hardest faced by a patient. Financial considerations are of course a huge part of the equation. Here in the States, having private disability insurance certainly makes the decision to leave work much easier, especially since Medicare and Social Security don't kick in until two years after long-term disability status has been established, and for many these programs only cover a small fraction of what they were previously earning. MSers in the United States should, without question, max out on any private disability insurance offered by their employers. Other countries with stronger safety nets at least partially alleviate this consideration.

Financial considerations aside, ultimately the decision to leave work because of MS disability often comes down to not only whether or not a person is still mentally and physically capable of completing their job requirements, but also soberly assessing whether the daily grind of working is taking a deleterious toll on the patient and negatively affecting their physical well-being. It’s incredible what people can endure, and the insidiously incremental nature of MS disability can often mask the multiplying effect the toil of struggling to stay employed can have on a body battling the illness.

Despite my obvious physical problems, I didn’t become completely aware of just how negatively working was affecting my health until after I had taken my leave. Only then did I become fully conscious of how physically and mentally exhausting my continuing to work had become. Most of the first few weeks of my retirement were spent sleeping, my body gratefully soaking up the rest it so desperately required. After that much needed period of decompression, I started the slow but ultimately gratifying process of redefining myself, in a sense becoming reacquainted with parts of me that hadn’t seen the full light of day since my youth. Happily, the end of employment is by no means the end of life itself, and indeed reclaiming time that would have otherwise been spent working affords one the opportunity to chart a new course, perhaps one even more suited to the individual than the one so grudgingly given up. It’s often said that every exit is an entrance, a truth I found embodied by my transition out of the workforce. I always said I didn’t live to work but worked to live, and now I can simply live.

That said, I know how important and meaningful work can be in the scheme many people's lives. The following videos, produced by the National Multiple Sclerosis Society, provide valuable info and insights on strategies for managing workplace issues associated with MS, and maximizing the ability of patients to continue working…

Bits and Pieces: Neurologists' Conference Edition (also: Tysabri,Tecfidera, Marijuana, Mold, Asinine Research, and other goodies)

(For those who receive Wheelchair Kamikaze via email, the following post contains videos which can be seen on the WK website – click here)

It’s time once again for Wheelchair Kamikaze’s semi regular compendium of MS news and notes.

Last week the American Academy of Neurology (AAN) held its annual meeting, this year held in Philadelphia. This weeklong event brings together some of the world’s best minds in neurology, and features presentations on all the latest and greatest research. I found it quite striking that this year’s multiple sclerosis presentations almost all had to do with information gleaned from drug trials, but since practically all mid to late stage medical research is conducted by the big pharmaceutical companies, I guess I shouldn’t be surprised. Most of the fault lies not with the drug companies themselves, but with the system within which they operate, which has handed these companies the reins of medical scientific investigation as governments and academia are increasingly less able to fund research due to the current political and economic climate. As a result, our medical research model is becoming more and more dysfunctional, with many potentially paradigm shifting basic research studies never making it out of the lab. Yippee!

I sometimes think about how strange life must be for neurologists who specialize in the most debilitating diseases of the nervous system, none of which have yet to be sufficiently remedied. Doctors practicing most other areas of medicine can look with satisfaction on the patients they’ve cured, but many neuros can spend their entire careers without ever having rid a patient of disease. I can’t help but imagine a group of specialist neurologists getting together at their annual meeting and quickly summarizing the major clinical advances of the past 12 months. “Let’s see, have we cured Parkinson’s disease?” “Nope…” “Okay, how about Huntington’s disease?” “Nope…” “Multiple sclerosis?” “Nope…” “Alzheimer’s?” “Nope…” “Muscular dystrophy?” “Nope…” “ALS?” “Nope…” “Right then, that sucks.... Anybody else really need a drink?…”

Okay, enough of my mental meanderings, here’s my latest collection of mostly MS related research and news, selected solely on the basis of what I deem to be important and/or interesting. Hey, it’s my blog and in this little corner of the Internet I rule with an iron fist. Actually, given my current state of physical decrepitude I’m not sure I could properly muster an iron fist, so I guess I’ll have to be satisfied ruling with a less than formidable half assed fist. Hey, we’ve gotta play the cards we’re dealt…

♦ First up, a sampling of the MS drug news that came out of the AAN meetings. Tysabri was shown to positively impact walking speed in some patients (click here). While at first glance this sounds impressive and could be an indicator that the drug has a positive impact on disease progression, digging down a little deeper leaves me less than knocked out. Slightly over 12% of patients on Tysabri demonstrated improved walking speeds over the course of two years of treatment, which really isn’t bad, but about 7% of patients treated with a placebo also managed a significant improvement in walking speed, which just goes to show you how variable is the nature of relapsing remitting MS. Tysabri did prove to be about 80% better than placebo in this regard, and since most patients would gladly settle for a state of stasis in their disease, any signs of improvement are a big plus. Researchers did find that this effect was more pronounced in patients with more advanced disability, with walking speed increased by as much as five times when compared to placebo in this patient group, which does make the research more compelling.

A small phase 2 trial of Tysabri on SPMS patients came up with encouraging outcomes (click here). In this study, 24 SPMS patients were treated with Tysabri for 60 months, and levels of osteopontin, a marker for inflammation, were tracked in their cerebrospinal fluid. Several other biomarkers were also tracked, and after 60 weeks of treatment statistically significant decreases in markers for inflammation, axonal damage, and demyelination were recorded. These are impressive findings, especially since there are currently no proven treatments for secondary progressive disease. Of course, these results will have to be replicated in larger trials, but this seems to be an encouraging start.

♦ In Tecfidera news, the oral MS drug was shown to be effective when used on patients with highly active disease, reducing annual relapse rates by 60% and the proportion of patients who relapsed by 63% when compared to placebo (click here). I know that many patients are concerned about Tecfidera’s uncomfortable side effects, and a study looking at gastrointestinal side effects in patients taking the drug found that “GI events were largely transient, occurred most frequently in the first month of therapy and were mostly reported as mild to moderate in severity. By the 10^th week of treatment, less than 10 percent of patients reported GI AEs. The incidence of discontinuation due to GI-related AEs was low (7.3 percent).”

There has been much conjecture as to Tecfidera’s primary method of action (in other words, why it works), and a study out of Germany demonstrates that the drug keeps certain immune system cells out of the central nervous system (click here). It’s already been established that Tecfidera has immunosuppressive properties, and it is suspected that the compound also has anti-inflammatory and antioxidant properties as well. Based on the latter suspected properties, some have speculated that the efficacy of Tecfidera could be replicated using a combination of dietary supplements, but since immunosuppression seems to be the drug’s primary method of attack such an approach likely wouldn’t duplicate the effectiveness of the drug.

♦ Okay, let’s turn away from the world of pharmaceuticals and take a look at some recent research regarding more “natural” approaches at treating MS. Green tea has long been extolled as a powerful antioxidant, and a recent study demonstrated that green tea extract has a positive impact on cognitive function (click here). In this small study, healthy volunteers were given green tea extract and then asked to do memory tasks while undergoing functional MRI imaging. The imaging showed that the extract appeared to improve conductivity between certain areas of the brain, and these areas correlated with improved memory function. Happy to hear it, as I take green tea extract every day…

♦ The human gut is home to a wide variety of bacteria, which are known to help with the process of digestion. Doctors have noted for some time that there seems to be some correlation between the gut and so-called autoimmune diseases, and a recent study bears this out (click here-registration may be required, but it’s free and well worth it). Researchers compared the microorganisms contained in the guts of MS patients with those found in healthy subjects, and discovered that MS patients have higher levels of a bacteria that is known to stimulate the immune system, and lower levels of two other types of microorganisms that excrete anti-inflammatory substances. Fascinating findings, I think, which definitely hint at reasons for an immune system gone haywire. Just goes to show how many different elements come into play in the complicated MS disease puzzle, and how many different approaches might be taken to treat the illness.

♦ Here in the US, more and more states are legalizing medical marijuana and a few are even making it legal to use the stuff for recreational purposes. Ganja has been touted as an effective treatment for MS spasticity and muscle spasms, and a recent review done by the American Academy of Neurology gives such notions the official stamp of approval (click here). The AAN found that the demon weed does indeed reduce spasticity and muscle spasms, and the pain associated with these symptoms.

I’ve recently been plagued by an uptick in spasticity and muscle spasms, and the spasms in particular have been driving me crazy. So, though Mary Jane is still illegal in New York State even for medicinal purposes, based on the above study I decided to imbibe in a little reefer madness. Lo and behold, my spasms took a powder and my spasticity loosened its grip.

Truth be told, even as a teenager I was never much of a stoner, though wild and unsubstantiated rumors have it that I occasionally imbibed in some other illicit substances back in the quixotic days of my wayward youth. Hey, I was a teenager and young adult in the 70s and 80s, which were the “say yes to drugs” era. Anyway, as far as sparking up a little boo goes, based on the above study and my own anecdotal experience I see no reason not to give it a try, but if you do, don’t Bogart that joint, my friend…


BTW, despite what the video says, the song is by the band Fraternity of Man, not Country Joe and the Fish. My guess is the person who made the video was probably all goofed up on muggles when they put it together.

♦ Another recent article I came across touched close to home. Between 1993-1995 I worked in a “sick” building which eventually needed to be decontaminated by experts in hazmat suits. In a despicable attempt to save money, the bastards who comprised my company’s upper management withheld a report that said that our building was rife with all kinds of molds and bacteria. I’ve long suspected that my exposure to these nasties played a role in my developing much of the physical crap I’ve been dealing with over the last 15 years or so, and a recent article by an environmental hygienist might just validate my suspicions (click here). The article claims that toxic mold has been associated with MS and other autoimmune diseases, and a quick search around the Internet yielded a few other pieces making similar connections (click here). Granted, the article that originally caught my attention was written by somebody who profits from diagnosing sick buildings, but it isn’t hard to imagine that being exposed to all kinds of toxic muck for an extended period of time could lead to a wide variety of medical problems. And the kicker is that I hated that freaking job…

♦ The good folks at Healthline.com have put together a page full of infographics illustrating “Multiple Sclerosis by the Numbers: Facts, Statistics, and You” (click here). The page delves into statistics and information related to MS disease prevalence, risk factors, and the frequency of the different types of MS, along with symptoms and treatment options. It’s a great primer for all things MS, and highlights some interesting and beguiling facts about the disease. I think my favorite illustration is this one, which starkly demonstrates just how more prevalent MS is in northern regions than southern, using a map of the United States as an example.

The above Infographic shows that people living in the northern half of the US are just about twice as likely to develop MS as those living in the southern states. The Infographic doesn’t go into some other interesting elements regarding the regional effect on MS, such as the fact that people moving from north to south before the age of 15 take on the lower MS risk factors associated with the southern region, while those moving after the age of 15 retain the North’s higher risk of MS. Riddle me that, Batman…

♦ Okay, it’s time once again for one of my favorite topics (drumroll please), ASININE RESEARCH! Scientists from the University of Kansas heroically decided to tackle the following mindbending question: “Is there an increased risk of hip fracture in multiple sclerosis?” (click here). My God, of all of the mysteries associated with MS, finally – finally – paid researchers have valiantly taken on a question that folks with even the scantest knowledge of the disease could answer in about two seconds. Wait – before I divulge their findings, please take a fraction of a second and see if you can guess the answer to this most vexing of inquiries.

Okay, after spending a few microseconds contemplating whether or not multiple sclerosis – a disease that can weaken limbs and thus make walking a bit, um, treacherous – might lead to an increased risk of hip fractures, did you come up with the startlingly radical answer of “yes”? If so, kudos to you, you are now an official multiple sclerosis researcher. You can pick up your certificate at the nearest sandwich shop.

Indeed, after reviewing over one million (!) hospital records of hip fracture admissions spanning a period of 20 years, our stalwart investigators found that MS patients were over twice as likely to suffer hip fractures than the population at large!!! Shocking, no? I mean, who could have possibly surmised that a disease whose symptoms include muscle weakness, spasticity, paralysis, numbness, and balance issues could ever lead those afflicted with it to fall down and break their hips? I only wish the researchers had been able to quantify just how more likely MS patients were to suffer scraped knees and bruised elbows. Inquiring minds want to know!

While I wait on tenterhooks for those revelations, let me try to save future researchers a whole lot of time and effort by answering some other enigmatic questions: Do people with MS have an increased number of visits to neurologists? Yes! Do bladder frequency/urgency issues lead people with MS to spend a ridiculous amount of time in the bathroom? Wait a second, I'll tell you as soon as I get back from the loo... Do bears shit in the woods, is the Pope Catholic, do some researchers seem to have nothing better to do than waste time and money for no apparent reason other than my amusement? Why, yes, yes, and yes! Now which sandwich shop do I go to to pick up my Nobel Prize?…

♦ I leave you, dear readers, with the following music clip, by the British artist Paolo Nutini. I’ve been listening to a lot of the new “retro” Soul and R&B, the best of which captures the spirit of the great music that was made between the mid-60s and early 70s. Being 50 and an old fart gimp who is almost completely divorced from pop culture, this new music has come as something of a revelation, like mana from heaven. Before running across the song, I was completely unaware of Paolo Nutini, but since the video has almost two million hits I suppose I missed something somewhere along the way. From what I can gather, Mr. Nutini is much better known in the UK than in the US, but then again, he could be a household name among twentysomethings here in the states and I’d never know it. Anyway, I think it’s a great song that definitely has that indefinable element called “soul”. It also includes a spoken word piece that comes from a speech in the 1940 Charlie Chaplin film The Great Dictator, a monologue which is as relevant today as it was 74 years ago. The Chaplin clip is well worth googling if you’ve never seen/heard it. I hope you enjoy the music…

Suspended

A reliable staple of science fiction space adventures is the concept of “suspended animation”, whereby astronauts traveling to far off galaxies are put into a kind of hibernation during which they don’t age or otherwise feel the effects of their long, perilous journeys. Safe in their suspended animation pods, these fictional voyagers are awakened upon reaching their destination, blissfully unaware of the months, years, or decades that have passed since they left their home planet. For all they know, while they were in suspension the world they left may have changed radically, or may no longer even exist. Separated from their previous lives by time and distance, the reanimated travelers now inhabit a new reality, for better or worse (in most pieces of science fiction, it’s usually for worse).

I’ve come to realize that in some ways my illness has had a similar effect on me. As my creeping paralysis has progressed, leaving me less and less able to take part in the ordered chaos of the world at large, I find myself increasingly alienated from the life I once knew, my space in the existence I used to occupy now almost totally erased. I’m still here, of course, part of the world but also apart from it, more spectator of than participant in the game of life. The never ceasing whirl of activity outside of my metaphorical and physical windows continues on, but the threads that once tied me to the self-perpetuating clamor of everyday life have largely been cut, putting me in a sort of conscious state of suspended animation. The gears of the world grind on, but more and more, they grind on without me.

The most tangible examples of this are the changes that have come to the industry in which I once earned my living. I spent 20 years building a career in TV and video production, which culminated in my heading up the DVD Production Department of a huge multinational music/entertainment conglomerate. My group was responsible for the programming and mastering of hundreds of discs, some of which sold hundreds of thousands of copies. When I first started in the position DVDs were such a brand-new technology that most people hadn’t even yet heard of them. Within a few years, though, DVDs exploded, and just as my disease was forcing me to to “retire”, Blu-ray discs had started to emerge as the next generation of consumer media. Now, over seven years later, streaming video (à la Netflix) is all the rage, a development I'd long anticipated  but never got the chance to play a hand in.

The changing landscape of video production and consumer consumption has marched on without me, and the technological infrastructure to which I was a native and used daily to earn my keep has in short course become archaic. If I were to be suddenly cured and tried to reenter the workforce I’d be so far behind the curve that some snot nosed kid just out of college would put my once formidable technological knowledge to absolute shame. As far as my former industry is concerned, I might as well have spent the last seven years on a spaceship in suspended animation. Ground control to Major Marc…

The shock of my diagnosis created a seismic shift in my existence, and that shock reverberates still. You’d think that 11 years after my initial diagnosis, and over 15 years since my first symptoms started cropping up, I’d have somehow gotten used to the idea of my illness and its destructiveness, but no, several times a day I still find myself smacked in the head by the realities of my predicament. This perpetual state of shock has left parts of me petrified, in every sense of the word. Petrified as in scared silly, but also petrified as in unchanged despite the passage of time. I was officially diagnosed at age 39, and now, at 50 years old, parts of the inner me have been left untouched by the intervening years, stuck in a kind of stasis, in much the same state that they were when the disease first took hold. It’s kind of a diabolical case of arrested development; even as my body becomes ever more decrepit, parts of the me encased inside of it have been untouched by the passing years.

Almost all of my old hopes, dreams, and desires stand frozen, as if parts of my very soul have been put on ice (apologies to Eldridge Cleaver). Now, instead of propelling me forward in an effort to fulfill them, those old longings and expectations only serve to put an exclamation point on just how much the disease has cost me. The physical toll is obvious but the psychic not so much, camouflaged by copious amounts of effort spent trying to maintain a sense of stability and even contentment in the face of this brutal and ceaseless storm. Will I really never get to have my breath taken away by the artistic splendors of Florence, or purchase some ludicrously luxurious and fast automobile, or get stinking drunk on ouzo while carousing on an idyllic Greek island? While healthy, there was always the hope of erasing old disappointments with new successes, of paving over past mistakes with future achievements, but now those previous failings have been transformed from works in progress into set pieces, dioramas in the museum of my mind.

Yes, I dreamed big, and dreams die hard. In fact, I don’t think they ever die at all, but my old dreams now lie fixed behind a set of more humble but – barring any medical breakthroughs – much less achievable desires. To simply stroll through the springtime air, or to hug my wife with two strong arms, or to mindlessly jot down a note with my now-defunct right hand. In my long-ago life I amassed extensive collections of antique cameras and vintage wristwatches, both of which I took much delight in putting to good use. Now they sit gathering dust in boxes, physical remnants of a life suspended, the impulses that lead to my possessing them still existent but now also packed away by the distressing actualities of my stark new reality.

Much like those science-fiction spacemen, I awake to an environment that is resonant with echoes of my past. This new life is often incredibly difficult, to be sure, but the challenges it presents are also opportunities. Though some old friends and acquaintances have drifted away, new ones, fellow travelers on these uncharted waters, have made the journey much less lonely. The loyalty of my wonderful wife alone is reason to have faith in humanity. By extracting me from the hue and cry of my old healthy existence, my disease has afforded me a sense of perspective that informs my  day-to-day life, and, I hope, might even help some of my comrades both healthy and ill to better navigate their own winding roads.

I’ve learned to not sweat the small stuff, and that most of what I used to consider gut wrenching problems are in reality small stuff. As my disease continues its infernal progression, finding contentment in what I have rather than what I once wanted or have lost has become a mechanism of survival. As the Buddha discovered centuries ago, desire, or more accurately attachment to desire, is indeed the root of all suffering. Despite the undeniable hardships within which I find myself stuck, I laugh just about as often as I used to, the sheer absurdity of my situation fodder for more laughter than tears. My mom is dealing with her own sense of suspended animation, courtesy Parkinson’s disease, yet somehow our telephone conversations often find us convulsed in hilarity. We both have more than a touch of the rascal in us, and the juxtaposition of our old pre-suspension hijinks with our new more sedentary and sedate forced existences serve to highlight the farcical nature of our puny little lives. Taking oneself too seriously is perhaps the gravest mistake a person can make.

Don’t get me wrong, despite the lessons learned and perspective gained, there’s virtually nothing I wouldn’t do to regain my health. As my creeping paralysis continues its increasingly destructive march, my tolerance for risk in my search for answers has become almost boundless, but despite my precarious situation there is still satisfaction to be squeezed out of these undeniably frightful circumstances. The old me is indeed in suspended animation, hopefully one day to be roused once again, but there is still life to be lived in this strange new world in which I find myself. It’s certainly not a life I would’ve chosen, but like it or not, it has chosen me. Despairing over my losses is only natural, but giving in to that despair would hand victory to the cosmic pranksters that conspire to make me the butt of their joke. I still have a middle finger capable of being raised, and with that raised finger I’ll continue to poke those pernicious little fuckers right in their beady little eyes. The joke's on them, for although part of me has been put into suspended animation, I'm still full of piss and vinegar…

11 Years Gimpy and the Lessons Learned, Part Two: Medicine

Caduceus Symbol - Medical Symbol MD (Photo credit: wcm1111)

Last month I “celebrated” the 11^th anniversary of my MS diagnosis with part one of Lessons Learned (click here), which looked at some of the insights my grappling with the disease had revealed about life, both the one lived inside my head and the kaleidoscopic swirl of the world around me. Along with the expected liberal dose of anguish, the disease has also brought with it some unexpected flashes of understanding, and maybe even something akin to a bit of wisdom. Not to say that I’ve got much of anything figured out, but I have at times gained a sense of clarity that was most often missing back when I was healthy.

My decade plus wrestle with chronic progressive disabling illness has also taught me a hell of a lot about modern medicine and medical research. Admittedly, these are lessons I naturally would rather have not had to learn, but I didn’t have much choice in the matter. Multiple sclerosis is an enigmatic disease, and the rarer, progressive forms of the disease are particularly inscrutable, but my affliction managed to wake within me a long dormant inner scientist, or an at least inner scientist wannabe, who finds a lot of this stuff fascinating, frustrating, infuriating, and maybe sometimes even a little bit fulfilling. I sure do wish that wake-up call had come in the form of something much less horrific, but again, that wasn’t up to me. If nothing else, the time since my diagnosis has made for quite an education.

When I was living my long-ago and far away healthy life, my interactions with the world of medicine were usually brief and fairly perfunctory, even if I did have a pretty good working knowledge of disease due to my well hewn hypochondria. I took comfort, though, in the seemingly nonstop procession of blaring headlines and breathless news items regarding the latest medical breakthroughs, which painted a picture of modern medicine as something close to a bright and shiny miracle machine, ever more able to conquer devastating illness and fix broken bodies.

When I got sick, however, it didn’t take long for me to come to the uncomfortable realization that I’d been somewhat hoodwinked, that although some specific areas of medicine had seen huge advances, large parts of the modern medicine miracle machine so often portrayed in the media are in fact held together by shoestring and chewing gum. High-tech and expensive shoestring and chewing gum to be sure, wielded by some dedicated and knowledgeable people, but in far too many cases not much more effective than the shoestring and chewing gum that existed half a century ago.

Tremendous breakthroughs have been made in the surgical arena, where procedures that are now done daily would have been looked on as the stuff of fantasy 50 years ago. It wasn’t until 1954 that the first kidney transplant was performed, and over the next 15 years transplants of lungs, livers, and hearts were first successfully achieved. These procedures, all lifesavers, are now common if not routine. The advents of bypass surgery and angioplasty have been incredible game changers in the field of cardiac medicine, and neurosurgery too has witnessed advances barely dreamt of just a few decades ago. Surgery has become increasingly less invasive and much more survivable. Back in 1989 I suffered a detached retina, resulting in a surgery that required a four-day hospital stay and a two-month convalescence. Today, the same procedure is done on an outpatient basis. Incredible.

When it comes to treating many diseases, though, shockingly few tangible advances have been made in the last 50 years. Antibiotics have revolutionized the treatment of diseases caused by bacterial infections, but wide swathes of other illnesses have proven incredibly hard to crack. Neurologic diseases such as ALS, Parkinson’s, Alzheimer’s, and other less common maladies of the nervous system remain as untreatable as ever. The so-called autoimmune illnesses like diabetes, lupus, multiple sclerosis, and rheumatoid arthritis continue to stymie researchers, and though some of these diseases now have treatments that improve quality of life, none have divulged any of the secrets that might lead to a cure. 

Despite massive amounts of time and money spent on research, many cancers remain just as deadly today as they were in years past. Though some specific malignancies - such as those of the breast, prostate, and lung - are much more survivable today than ever before, the overall cancer death rate has decreased, astoundingly, only 5% since 1950 (click here)! When it comes to the vast majority of cancers, medicine has learned how to keep those afflicted alive somewhat longer, and there is of course much to be said for that, but it hasn’t found a way to keep them from dying of their malignancies. All in all, many diseases, though perhaps better understood, remain devastating and deadly despite the efforts of the modern medicine establishment. The situation makes me want to howl in dismay.

Naturally, the disease I’m most intimately familiar with is MS. Surely, there have been significant advances made in treating the relapsing remitting form of the disease, but the progressive flavors of the disease remained wicked, untamed, diabolical beasts. Though the mysteries of MS are slowly being unraveled, the advances have been incremental, and each new discovery seems to only open the door for more questions. Just a little over 20 years ago there were no treatments for even relapsing remitting multiple sclerosis (RRMS), aside from the use of intravenous steroids to help calm down active relapses. The disease was considered by many doctors to be a “diagnose and adios” illness, for which not much could be done. Today, there are 10 FDA approved disease modifying drugs on the market, with a handful more on the way. None of these drugs is perfect, with a wide variance of effectiveness, tolerance, and potentially dangerous – and even deadly – side effects among them, but they have improved the quality of life of people with RRMS, in many cases dramatically.

I was intensely skeptical and harshly critical of some of these drugs when they were first introduced, thinking that their risks would far outweigh any potential benefits, but time and mounting evidence has softened my views. Facts are facts, and the preponderance of evidence shows that when administered properly to diligently monitored patients, even those MS drugs considered the most dangerous have had tremendous positive impact on many of the relapsing remitting patients who take them, at times even allowing some patients to live lives free of any evidence of disease activity, and experienced neurologists have learned to manage the risks involved quite well. That said, the status quo remains unacceptable. There is still nothing for us “progressives”, and all of the current MS drugs tinker to a lesser or greater extent with the workings of the intensely complex human immune system, the product of tens of millions of years of evolution. It’s clear that the aberrant immune response that has become the hallmark of MS is in reality a symptom of a much greater and as yet undiscovered ill, and continued focus on that immune response will not lead to a cure. Unfortunately, the very success of the immunosuppressant agents used to treat MS has made the search for the ultimate cause of the disease all the more difficult. Why? Because, quite simply, our system for medical research is flat out broken.

Up until about 20 or 30 years ago, most medical research was done on behalf of governments and academia, for whom profit potential didn’t much play into the equation. Since the 1980s, though, more and more research has been funded by the big pharmaceutical companies, and today upwards of 75% of all medical research is powered by pharmaceutical company monies, with that number growing ever higher due to our current economic and political climate. Though some of the business practices of these companies can be nauseating, there’s nothing inherently evil about the companies that develop, market, and manufacture pharmaceutical products.

It’s vitally important when thinking about these Big Pharma companies to keep in mind that they are publicly traded for-profit entities, and as such they are mandated by law to be beholden to their shareholders, not to the end-users of their products – otherwise known as patients. This dynamic creates some inherent conflicts of interest, as the mission of any business is to generate ever-increasing profits, and when it comes to medicine greater profits do not always translate into greater therapeutics. In some cases, the very reverse may be true.

Simply put, the job of a drug company CEO is not necessarily to produce the most effective drugs, but the most profitable. In point of fact, if a pharmaceutical CEO put medical potential above profit potential he could very well be breaking the law. Therefore, pharmaceutical company research monies pour into projects that stand the greatest chance of generating terrific profit, which are likely not efforts that might upend an already lucrative business model. This is why so many of the new drugs we see are of the “me too” variety, variations on older drugs that have already proven their profit potential. The corrosive influence of big money generated by blockbuster drugs has thoroughly infiltrated our medical research model, skewing the focus of much medical research from purely scientific to also encompass the predilections of the marketplace.

For their part, researchers, as well-intentioned as they may be, must pay the rent and feed their families just like everybody else, and so are drawn to projects most likely to receive generous funding, which these days are those that have the attentions of the big pharmaceutical companies. Thus we have on our hands a kind of highly dysfunctional perpetual motion machine, fueled by people performing their jobs to the best of their abilities, which unfortunately is not constituted to produce the results most desired by legions of sick people and the professionals who treat them.

The problem is insidious, and is at this point woven into the very fabric of the system. Though this system has certainly come up with its share of medical advances, it hasn’t produced much in the way of cures, and in fact can stymie potentially paradigm shifting research that doesn’t present any obvious profit potential and/or threatens the status quo. Older drugs that might be repurposed for the greater good, or natural and alternative remedies that might be as effective as pharmaceutical products stand very little chance of receiving the research dollars needed to prove their worth simply because they have no potential to generate tremendous amounts of cash. Radical new concepts are often shunned not out of evil intent but for cold business reasons, as bringing them to fruition would be cost prohibitive, and even if successful they could kill the proverbial goose that lays the golden egg. We have turned diseases into multibillion-dollar industries and the sick into consumers in a topsy-turvy medical research environment in which success is most often measured in dollars earned, not diseases eradicated or people cured. What’s the answer? Got me, I’m too busy slowly watching myself becoming a complete cripple.

So, where does this leave me after my 11 year struggle with MS? Well, conflicted, to say the least. I’ve met incredibly dedicated professionals who are literally obsessed with finding the cure for MS, filling me with hope. Simultaneously, though, I’ve come to understand that despite these folk’s best efforts, the system within which they work is fundamentally flawed, a fact which fills me with consternation. That gleaming tower that modern medicine appeared to be when I was healthy has instead been revealed to be more a product of spin and public relations than reality. I’ve evolved as a person and a patient, as I’ve come to understand that there are no absolutes when it comes to life and medicine, and especially when it comes to a disease as devilish as multiple sclerosis.

Despite the mysteries of the disease and the madly dysfunctional research model that is now the norm, each day I read some stimulating new bit of research, or talk to a researcher wholly dedicated to the cause, and can’t help but nurture a persistent optimism, even in the face of my relentlessly progressing disease and the tremendous obstacles that stand between me and the realization of my dream to once again be whole. Stem cells may hold the answer, or anti-HIV drugs, or something completely unexpected that may pop out of some far away test tube tomorrow. We can only hope that if and when such a discovery is made, it manages to see the light of day.

Really, though, I just want to take a walk…

Bits and Pieces: Can’t Please Everyone Edition (Also, MS and: Statin Drugs, Ancient Viruses, Obesity, and Contraception; Thank Your Doctor, and an MS Photo App!)

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

In my meanderings around the MS Internet, poking my nose into both highly trafficked spots and those more obscure, I occasionally find references to individual Wheelchair Kamikaze posts or to the blog in general. Usually these mentions are quite complementary, and upon reading them I sit before my screen blushing like a young man who just vomited at his boss’s table during the office Christmas party (um, not that I would have any firsthand knowledge of what that would feel like… and if Mr. Riley is reading this, I still insist it was the Cornish hens and not the Bombay Sapphire martinis).

Over the past week or so, though, I noticed comments from a couple of people who weren’t all that thrilled with me. Not that this is necessarily a bad thing, because I like to think that I’m very open to healthy criticism, and besides, it was interesting to see just how many times an iPad can bounce off the floor before becoming completely nonfunctional.

One critic said that I was very “pro-chemotherapy”, and the other labeled me as part of the “CCSVI Mafia”. I find these characterizations somewhat puzzling, since they are kind of contradictory, and I’m not sure either is accurate. I often come down hard on some of the unsavory business practices of the pharmaceutical companies, but I think I give their products a fair shake (I guess too fair, in the eyes of some), and when I write about CCSVI or other alternative treatments I always try to stress that one must be careful not to let hope eclipse reason. I suppose the fact that people can read my stuff and come away with such divergent opinions might mean I’m actually doing a pretty good job; on the other hand, it could also mean I’m totally incoherent. Birdseed armpits genuflecting knuckle fish, Tennessee Titans!

For the record, I think it's silly to be "pro" or "anti-" any particular form or category of treatment. Each MS patient is different, and each must weigh the risks and benefits of any treatment they are considering based on their own individual circumstances. Some currently marketed pharmaceutical MS drugs might often fail such an analysis, but other would certainly be in play. Same thing holds true for many unconventional therapies. Education and an open mind are a patient's best weapons against this disease, and will continue to be regardless of the many twists and turns the MS story takes as it continues to unfold.

Okay then, enough of my belly gazing, here’s another collection of mostly MS related items that have tickled my fancy or raised my hackles over the last month or so. I don’t think any of them tickled my hackles or raised my fancy, as to do so they’d at least have to take me out for dinner and a movie first…

♦ First up, an update on the fundraising campaign for the Tisch MS Center’s FDA approved MS stem cell trial, which I wrote about extensively in my last post (click here): As I write this, the Center’s Indiegogo campaign is approaching $200,000 raised, two thirds of the way to their target of $300,000. As I detailed last week, this stem cell trial could play a pivotal role in one of the most promising new directions in multiple sclerosis research, and contains within it the hope that someday in the not-too-distant future we may be able to reverse the damage done by the disease. So, a big thank you to all WK readers who have already contributed, and a big “please help” to those who haven’t yet done so. Every little bit helps, and a contribution of even a dollar or two gets the trial that much closer to swinging into high gear. Contributing is easy, just go to the Tisch Center’s Indiegogo page (click here) and click the “Contribute Now” button. Thank you thank you thank you.

♦ This week’s big MS headlines involve a study which found that a drug commonly used to control cholesterol might dramatically slow the progression of multiple sclerosis in patients with Secondary Progressive disease (click here). The phase 2 study, called MS-STAT, demonstrated that the statin drug simvastatin (brand name Zocor), when given in high doses, slowed brain atrophy by as much as 43% when compared to a placebo. Brain atrophy (shrinkage) is increasingly being recognized as an important factor in the MS disease process, and may be more indicative of disability and disease progression then other more commonly used indicators such as brain and spinal cord lesions.

The MS-STAT study is intriguing on several levels. The fact that a class of drugs as commonly used as the statins may be effective in treating progressive MS is both intriguing and problematic. Intriguing because the drugs are already in widespread use and have been shown to be safe over the several decades since their introduction. Therein, though, is also the problem. Because these are old drugs, their patents have expired, meaning they are available as cheap generics. Therefore, there’s not much profit to be made from them, and thus there is very little incentive for pharmaceutical companies to pony up the many millions of dollars it would cost to put these drugs through the final phase 3 studies that would be necessary to get them approved for use in MS patients. This isn’t really the fault of the pharmaceutical companies, per se, as they are for-profit operations in business to make money. Rather, this shines a bright spotlight on our very broken medical research model, which relies far too heavily on Big Pharma funding to drive research forward.

It’s conceivable that neurologists could prescribe simvastatin to MS patients on an “off label” basis, since the drug has already been approved for use in humans as a cholesterol buster. Problematically, though, the doses used in the MS study were quite high, and statin drugs do have some known side effects, including muscle weakness, which certainly wouldn’t be a good thing for MS folks. The MS-STAT trial was a relatively small phase 2 study, and its results beg to be replicated in a larger phase 3 study, especially since previous trials testing the use of statin drugs as an add-on therapy for RRMS patients did not demonstrate effectiveness (click here), and some studies showed that statin drugs may inhibit the remyelination process (click here). Let’s hope that somehow phase 3 studies can be funded, as progressive MS patients are in desperate need of effective treatments.

♦ One of my favorite theories about the cause of MS involves human endogenous retroviruses, or HERVs, which I wrote about in detail last year (click here). The theory is once again making headlines (click here). HERVs are ancient bits of retroviruses (viruses similar to HIV) that have been incorporated into the human genome throughout the course of millions of years of evolution. Hard as it may be to believe, studies have found that about 8% of human DNA is actually made up of these ancient viruses. Scientists had long thought that this ancient viral material was simply leftover inactive garbage, but recently researchers have found that, under certain conditions, these ancient viruses can be switched “on” and cause our own cells to express proteins that could lead to all kinds of problems in the human body. HERVs have been associated with autoimmune diseases, cancers, and even some mental illnesses.

There are currently two trials underway attempting to use drugs to target HERVs in MS patients. One study, being conducted in London, is using an off-the-shelf HIV medication called Issentris in an attempt to treat MS. This study has its genesis in the observations of an Australian virologist, Dr. Julian Gold, who treated a patient unlucky enough to have both MS and HIV. After the patient started taking powerful anti-HIV drugs, Dr. Gold observed that the patient's MS symptoms gradually improved, and after two years the patient was no longer experiencing MS relapses. Subsequent studies have indicated that the risk of MS is markedly lower in HIV patients undergoing anti-HIV therapy than that of the general population. Interesting stuff, to say the least…

♦ Two new studies point to a hormonal component in the MS disease process (click here). One study found that people who were obese at age 20 had a 50% higher chance of developing MS than their thinner counterparts. Obese people also generally have higher levels of lectin, a hormone that controls weight, appetite, and immune response. The second study found that women who took hormonal contraceptive pills had a 35% higher rate of developing MS than women using other types of contraception or no contraception at all. Most of the women taking hormonal contraceptives were on pills that combined estrogen and progestin. Researchers suggested that this finding may explain the rising rate of MS in the female population.

It’s long been thought that hormones play some role in MS. Pregnant women with MS usually see their disease go into remission during their pregnancies, and male MS patients often exhibit low testosterone levels. On a personal note, my entire endocrine system is completely out of whack, with many of my hormone levels all over the place. I’m the only male who suffers from PMS (in my case, the initials stand for Phooey on Marc Stecker).

♦ Do you have a physician that deserves a great big “thank you”? Do you want the chance to win a $10 iTunes gift card? Well, if the answers to those questions are yes, you’re in luck, because it just so happens that March 30 is National Doctors Day and the fine people at Sermo.com are asking that patients contribute a message via the Sermo website thanking their favorite doctors (click here). Sermo is a social networking site for doctors, kind of a Facebook for physicians. The thank you’s can be submitted in written or video form, and the 50 best will win a $10 iTunes gift card. Written comments can simply be left on the Sermo blog (click here). Video entries should be uploaded to YouTube and include “DocsDay” in the title. The video link should then be tweeted to @sermo with the hashtag #DocsDay.

I know that many patients have a love/hate (or even a hate/hate) relationship with some of their doctors, and I also know that some physicians deserve not a thank you but a whack in the head with a horse manure filled sock. But there are many gems amongst the folks who have the initials M.D. after their names, and those paragons of their profession certainly deserve a public shout out. As of this writing, there were less than a dozen written thank you’s on the Sermo.com blog and just a few videos on YouTube with only three days to go before March 30, so your chances of winning a gift card are probably pretty good if you submit a heartfelt message before the deadline.

On the video “thank you” side of things, this lady decided to extol the virtues of her MS neuro in song, and all I can say is “wow!”:


♦ Here’s an MS fundraising/awareness project that’s right up my alley. Seeing MS is a project done in conjunction with the Australian MS Society that has matched professional photographers with MS patients to attempt to produce photographic representations of “invisible” MS symptoms (click here). The photos thus far produced are remarkable, but to me the best part of the project is a photo app that MS patients (or anybody else) can download for their iPhone or android devices, which has unique filters that can be used to create photos that emulate nine of the more common symptoms of MS.

Amateur MS phone photographers can shoot pictures using the app, apply the filter of their choice, and then upload their photo to the Seeing MS website, where it will be displayed for all to see. The best images will be chosen to be part of an exhibition and auction to be held at the end of April. So download the app (click here) and start clicking away. I’ve already uploaded a photo or two, and would love to see some of my WK brethren join me in displaying their work on the Seeing MS website.


♦ I’ll sign off with the following video, which explores a topic I'm very much familiar with, the enigmatic hour of 4 AM. I am by nature a nocturnal creature, always have been. Even as an infant, my mother tells me, I was prone to stay up very late and then sleep well into the morning. When the realities of adult life forced me to conform to the typical 9-to-5 hours of the workaday world, I found the schedule to be quite torturous. Since "retiring" due to my illness, I've reverted back to my natural inclinations. While most people are long asleep by 4 AM, and some poor souls are just waking up, these days I find that hour to quite often be my bedtime. In the below clip, a part of the famous TED talk series, the poet and storyteller Rives reveals his humorous discovery of a 4 AM conspiracy, the hour encoded into the very fabric of our culture as a sort of touchstone for things mysterious and gloomy. So, are my sleep habits merely a coincidence, or have I tapped into some kind of cultural zeitgeist, my late-night predilections a reflection of some universal subconscious? Well, I don't believe there is any such thing as coincidence, but if my quirks are symbolic of a hidden societal phenomena, I fear much wackiness may ensue in our collective future…



RIP Brett Weber, gone but never forgotten. Thanks for the smiles.