Attended a Benefit for the University of Buffalo CCSVI Imaging Study

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Last Friday night, January 29, my wife and I attended a small fundraising party for the University at Buffalo's ongoing CCSVI imaging study, which is attempting to determine if there is a clear correlation between the vascular abnormalities now known as CCSVI and Multiple Sclerosis.

The party was the first of what is hoped to be many such events held around the country, raising funds to expand the study from the 500 subjects that have already been imaged to the desired total of 1700 subjects. The study is single blinded, meaning that the researchers reading the MRV and Doppler imaging results don't know if the person imaged had MS or was a healthy test subject. This blinding ensures that no unintended bias on the part of the researchers can skew the results of the study.

The fundraiser, which was held in the Manhattan restaurant O'Neal's, was a great chance to meet and greet like-minded individuals who are hopeful that CCSVI will prove to be an important discovery in the quest to unravel the mystery that is MS. Hosted by Eric C. Alcott (Development Officer, UB School of Medicine and Biomedical Sciences) and his lovely wife Deborah, over a dozen supporters attended the event, and much interesting information and lively banter was exchanged. Hell, I'll go so far as to say the thing was actually fun, and I didn't even have to make good on my threat to run over the feet of anybody who went light on their donations. Guess I'll have to vent my kamikaze urges on some unsuspecting pedestrian on the street later this week.

The initial results from the first 500 patients studied are due to be released sometime within the next two weeks, and although nothing specific was divulged, it was hinted that we would very likely be encouraged by the results that will soon be disclosed.

If you'd like to help the continuation of the study with a donation, be on the lookout for fundraising parties near you, or, better yet, donate the whizbang 21st century way, directly from BNAC website.

Why the US News Media Silence on CCSVI?

Image by thorinside via Flickr

The topic of CCSVI, the radical new theory that MS may in fact be a vascular disease, has been raging on the Internet for several months now. On some prominent MS forums, the topic has bred near hysteria among contributors, and the websites of most of the major MS advocacy groups (the NMSS, the MSAA, etc.) have featured CCSVI information, with varying degrees of enthusiasm.

Outside of the US, CCSVI has been featured prominently in mainstream television and print news media outlets. In Canada, one of the major television networks aired a 20 minute long newsmagazine feature on CCSVI, and the pros and cons of the theory have been written about in many of the country's newspapers. The European news media have also devoted time to the theory, which got its start when the wife of an Italian vascular surgeon developed multiple sclerosis, and he investigated the blood vessels associated with her central nervous system, finding odd vascular abnormalities.

In the United States, though, the media have responded to this potentially groundbreaking theory with resounding silence. There have been no print articles about CCSVI in any major American newspaper, nor have any of the US television network news organizations paid it any notice. Very strange, given the breathless coverage many medical discoveries of lesser potential are given in the modern, voracious 24-hour news environment that demands a constant stream of newsworthy items and events. The "balloon boy" hoax was given countless hours of coverage; yet a story about a possible breakthrough in the fight against Multiple Sclerosis, a disease that affects hundreds of thousands of Americans, has warranted not even a whisper.

I've heard from very reliable sources that both CBS and ABC have had TV news stories in the can and ready to go for weeks now, but for some strange reason have not deemed them airworthy. Doctors and patients have been interviewed, and video pieces have been cut, only to be put on a shelf.

If I were a cynical man, I might wonder if sponsorship pressures could possibly be behind the silence of US news outlets. After all, if CCSVI were to prove correct, pharmaceutical companies would stand to lose billions of dollars in the yearly sales of the immunosuppressant MS drugs that have become a major cash cow for them. If I were a cynical man, I might watch all of the slick prescription drug commercials that now flood our airwaves, and contemplate the huge influence that the companies that pay to air them could exert on network and cable TV organizations with the mere threat of withholding some of their advertising dollars. If I were a cynical man, I might think about the fact that the United States no longer has any independent news gathering operations, the likes of which have all been swallowed up by huge corporate conglomerates whose focus is on the bottom line, not the dissemination of unbiased journalism.

I'm still not 100% convinced that CCSVI will prove to be THE answer for every patient struggling with multiple sclerosis. It very well might be, but there is still much to be discovered, and proper news coverage could spur into action research organizations, and the foundations that fund them, and thereby quicken the pace of discovery. If I were a cynical man, I'd contemplate these things while quietly humming the Viagra song...

Pants on the Ground, Wheelchair Style

I can't say I'm a fan of American Idol, as honestly, I've maybe watched 45 seconds of it through the years. I must admit, I'm not terribly fond of modern pop culture, and immensely prefer Lady Day to Lady Ga Ga. But even I have not been able to escape the charms of "Pants on the Ground" a little a cappella rap ditty that was performed by a 62-year-old gentleman during one of this year's American Idol auditions. Since it first aired a few weeks ago, the video clip of "Pants on the Ground" has gone viral, and I suspect that deep in the Amazonian forest, where pants haven't even been invented, there are tribal warriors chanting "Pants on the Ground" as they prepare for ritual battle. I've gotta admit, the little tune is kind of catchy...

Now, the irrepressible Mark E. Smith (the Mobility Superstar) and the folks from Pride Mobility have put together their own stellar video version of "Pants on the Ground". Pride Mobility, the manufacturer of fine mobility products, is the maker of the Wheelchair Kamikaze's own Quantum Rehab Q6000Z, the wheelchair part of Wheelchair Kamikaze. Mark E. Smith, when he's not busy being a junkyard dog gangsta rapper, serves as Pride Mobility's Consumer Research Manager, and runs the invaluable website Wheelchair Junkie , which in my humble opinion is the Web's best resource for information on all things wheelchair.

So now, strap yourselves in, pull your pants low, and get ready to groove to the Wheelchair Junkie's version of "Pants on the Ground"...

Every Exit An Entrance: Three Years on Disability

Image by Dan4th via Flickr

Today is the third anniversary of my leaving work and going on long-term disability. The universe being the lattice of coincidence that it is, today is also the 20st anniversary of the day I started the first job of what would be my career, TV/video/film production. Kinda weird symmetry, but so it goes...

Naturally, the day brings mixed feelings. I think back to January 18^th, 1990 with a fond sense of nostalgia. I was 26 years old, probably a bit late to be starting my first "real" job, but I spent about five years nurturing the delusion that I was going to be either the next Johnny Rotten or Jack Kerouac. I'd loudly and obnoxiously sworn off ever working a real job, but the combination of cruel fate and the hard realities of such little matters as shelter and eating forced my hand. A bizarre set of circumstances (including a missed train and a punch in the eye) landed me in Fort Lauderdale, Florida, pretty much flat busted and sleeping on my mother's couch.

With a degree in film from Boston University in hand, I managed to land a job as Associate Producer of Local Programming at Continental Cablevision of Broward County, the local cable TV outlet, for a salary barely above minimum wage. Even at that paltry sum, I was grossly overpaid, because I didn't know my ass from my elbow about much of anything, much less producing video programming. It was strictly the cachet that a degree from Boston had in South Florida in those days that got me the position.

My first assignment was to cover "Horatio Alger Day" at a local high school that was largely populated by impoverished kids from the wrong side of the tracks, who could do with a bit of inspirational hokum. I was sent out with a camera and an intern who knew even less than I did about the nuts and bolts of video production. I did my best at videotaping the event, and even did an interview with the keynote speaker, the founder of the Wendy's hamburger chain, Dave Thomas. When I got back to the studio and reviewed the footage, it quickly became embarrassingly apparent that I had forgotten to white balance the camera, and all of the images I recorded were tinted bizarrely orange, looking a lot more like they were shot on Mars than in Pompano Beach. And thus began my brilliant career.

Fast forward 17 years, to my last day of working at one of New York City's premier video and audio production facilities, as the Director of DVD Production, where I'd played a large part in putting out some of the best-selling music related DVDs in the history of the format. I'd been diagnosed with Primary Progressive MS nearly 4 years earlier, and the fracking disease had whacked away enough of me to make the decision to go on disability not much of a decision at all. Preferring to not engender either sympathy or pity, I composed a parting note to my coworkers that I intended to send out at the very end of the day, and requested that my higher-ups not do anything special to mark my departure.

Much to my chagrin, they ignored my request, and put together a little farewell party for me, complete with cake and champagne. Although I thought I would be mortified at such an event, it turned out to be a nice way to put some psychological punctuation on that chapter of my life. I'll always treasure the experience of having two of my most junior people, part-timers both younger than I was when I first started out, tell me that they didn't think they'd ever have a better boss, because they felt like I truly cared about them. Knowing a little something about my back story, the two gave me a book of photos of New York's punk rock scene in the 1970s. I think there's still a mark on the inside of my lip from where I had to bite it to keep from blubbering.

Well, it's been three years since that day, and I've gone from Director of DVD Production to Wheelchair Kamikaze. On my last day of work, I struggled out of the facility wearing an ankle brace, not even needing a cane. These days I spend much of my time with my ass firmly planted in a wheelchair. Thankfully, it's one that goes fast. I've grown fond of saying, "Go fast, even if your fast is slow".

Though some find the transition from working to disability jarring and traumatic, my experience was anything but. After an initial couple of weeks during which I felt compelled to call the office every day, I quickly adjusted to a life that was increasingly limited physically but was also suddenly filled with the freedom to do what I wanted to do when I wanted to do it.

It seems almost forbidden to admit this, especially since I achieved a fair measure of success in a very competitive, high profile industry, but the truth is that I never really liked working. To be completely honest, in many respects I hated it. The only job I truly enjoyed was that very first one, way back in Florida, when I made no money but spent my days shooting and editing video, writing scripts, wiring up video setups, and getting my hands dirty. As my career progressed, and I experienced "success", I became more of an administrator, and at times I felt like a prisoner, a captive to my own achievements. In the middle of my career, I had a couple of jobs which required me to put on a tie every day, and every morning I silently cursed as I slipped that silk noose around my neck.

My last job, the DVD gig, was much more gratifying, but I think that feeling had its roots more in knowing that I had made it to the major leagues than in the actual day to day work I was doing. It felt a lot better saying I was the "Director of DVD Production" for a music industry giant than it felt actually being it. In 18 years, I'd gone from screwing up "Horatio Alger Day" to directing a department that put out mass-market product that sold hundreds of thousands of copies, but I felt that I had somehow strayed far off my path, and I yearned for the freedom of my younger days, when chasing dreams trumped chasing dollars.

How odd, then, that this insidious, hateful disease has provided me the out I coveted. I've learned a lot about myself these last three years, and some things about others as well. I've gained some insight, and maybe even some wisdom, which I've tried to share, with varying degrees of success. Attempting to save my own ass, I've learned more about MS than about any other subject I've ever studied, and I've tried to communicate that knowledge too, so that other backsides might also be saved.

It's quite possible that all of this insight, knowledge, and learning may very well prove powerless in the face of the creeping paralysis that continues to afflict me, and certainly there must be much more benign ways to achieve self-awareness. But, like it or not, this is my lot, and I owe it to myself to make the most of it, and in some way try to imbue the experience with some measure of meaning. Faced with a constant reminder of the preciousness and frailty of existence, it becomes apparent that time should not be wasted.

Remembering Stella (Repost)

(Some good news and some bad news. First, the bad news. After trying a new drug (for me) to calm my mysterious  beast, I am instead caught in the throes of a struggle with it. Weaning off the drug now, so hopefully I'll be back to my "old normal" sooner rather than later. The good news is that all this should make for a pretty interesting blog post, including some outrageous pharmaceutical company shenanigans, the mysteries of my illness, and general adventures in medicine.. In the meantime, for your hopeful enjoyment, I'm reposting the below essay, written in January, 2010 about one of the best friends I've ever had. Thanks for reading, and a new essay will hopefully be up soon…

My best buddy Stella passed away just a little over three years ago. She was a faithful friend with a huge heart who always new just how to make me smile and often had me laughing riotously out loud. Stella was compassionate and sweet, and knew exactly how to live in the moment and seize every day. She was faithful, devoted and I knew that I could trust her entirely with my deepest darkest secrets. About the worst thing I can say about her is that she had the unshakable habit of loudly and vigorously chewing her paws in the middle of the night, while emitting strange noises that were impossible to sleep through.

Stella was, of course, my furry best friend, a yellow Labrador Retriever who came into my life in 1998, while I was still living in Fort Lauderdale. A coworker had just given birth to a baby girl and no longer had the time to care for Stella. I'd recently moved into a charming little 1940s Florida cottage with my then girlfriend, and was jonesing for a dog. So, the timing was perfect, and after two "meet and greets", during which Stella gave me the thumbs up, I was a happy new doggy daddy. Stella had just turned three years old when she came to me, and I was five years away from developing MS.

I hadn't had my own dog since I was a kid, but I had bonded with the canine companions of several friends and lovers that I'd met along the journey of my adult life. I was particularly close with a Dalmatian named Briar, whose owner unfortunately turned out to be a pathologically lying serial cheater who delighted in using my heart like a roll of Charmin. Quick life lesson: if you find out that your lover has cheated on every person they've ever been with, don't fool yourself into thinking you can somehow change them. Simply open your eyes to the truth, realize that once a person accepts such behaviors in themselves they will never change, and get as far away as possible, even if they have an adorable spotted four-legged creature with the most haunting eyes you've ever seen...

But, I digress. Stella and I quickly bonded, even as my girlfriend and I quickly unbonded. Turned out my Labrador friend enjoyed spending Sundays sprawled on the couch watching NFL games as much as I did, as long she could watch them while laying between my legs with her head nestled on my belly. We took long walks around the neighborhood together, although she wasn't much for jogging. The one time I took her out for a run, she made it about a block before squatting in the middle of the road and doing what dogs generally do when they squat. After completing that most natural of acts, Stella let me know that jogging just wasn't her thing. No harm, really, because jogging wasn't really my thing, either.

About six months after Stella joined me, the girlfriend and I decided to call it quits, and I decided to get the hell out of Florida, a place I never much cared for, even though I spent 10 years there. I think the tropical sun beating on your noggin causes some kind of dementia, because even though I felt like a stranger in a strange land the entire time I lived down there, for some reason I could never formulate actionable plans to leave. It was like, "gee, this place royally sucks, ooh, I think I'll go for a swim..."

Anyway, Stella and I were soon back in my hometown of New York City, living in a section of the city known affectionately as "Hells Kitchen". For a dog that was born and raised in Florida, Stella took to city life like a socialite. For some reason, she naturally curbed herself (if only the same could be said for socialites), and she loved the wonderful sniffing opportunities that the city streets offered up in droves. She also loved the take-out Chinese joint around the corner from our apartment, which always had partially eaten chicken wings discarded on the sidewalk in front of it. One of the few arguments Stella and I ever had were over her insistence on insanely gobbling down as many of those gnawed on chicken bones as quickly as she possibly could, but a few rounds of very stern "bad girls" helped her kick the habit. You see, she really was a "good girl", and my disapproval trumped the irresistible gristly remains of chicken wings, true testament of her feelings for me.

For about a year, Stella and I were strictly a duo, spending lots of time at neighborhood dog runs and in Central Park, where she'd occasionally take an ecstatic jump in the lake. She absolutely lost her mind during that winter's first snowfall, which was the first snow the native Floridian had ever seen. If pure joy could be embodied in flesh and blood, it would be Stella burying herself in mounds of freshly fallen snow and then wriggling on her back to make canine snow angels. Her glee was infectious, and soon I too was a snow-covered whirling dervish, joining Stella in her carefree frolicking, covered head to toe in the powdery white stuff blanketing the fields of Central Park.

After about a year back in the city, late one night in a neighborhood bar I met a girl named Karen, who, despite my best efforts, didn't seem very interested until I mentioned the fact that I had to get home to walk my Labrador Retriever. Turned out that Karen had grown up with Labradors, and, figuring that a single guy with a Labrador couldn't be all that bad, she gave me her number. Just about two years later, we were married. At first, Stella didn't exactly welcome Karen with open paws; after all, Karen had supplanted her place on the couch. But the two soon became buddies, and Karen even succeeded in getting Stella to lose a little weight (for a while, we referred to her as "Jabba the Pup"), much to the veterinarians delight.

For a year, everything was hunky dory, until one very cold day in March 2003, when I took Stella for a very long walk along the Hudson River. About 2 miles into our trek, I noticed that I'd started limping. I didn't think much of it, but in the following weeks, the limp in my right leg grew worse, and I felt my right arm starting to weaken. Several doctors visits and an MRI later, and I found myself sitting in a doctor's office listening to words like "multiple sclerosis" and "progression" and "spinal tap" somehow become associated with the words "me" and "holy shit".

Strangely enough, just about the same time, Stella also started having all kinds of health problems. I honestly believe that she was so empathic that she somehow shared my distress and manifested physical illnesses of her own. Between 2003 and 2006, Stella developed mast cell cancer and autoimmune hepatitis. She had multiple surgeries to get rid of the cancer, and was put on a variety of medications and a special diet to address the hepatitis. For a while, we were actually both on the same immunosuppressants, bought from the same pharmacist. On several occasions, it appeared that Stella was on death's door, but she always managed to somehow pull through, often to the veterinarian's surprise. He'd smile, shrug his shoulders, and offer the only explanation he could, "She's Stella..."

Through it all, Stella stayed Stella. Though she would suffer a while from her painful surgeries, and the hepatitis would sometimes rob her of strength and appetite, as soon as she felt a little bit better, her tail was wagging, her eyes were bright, and she was ready to embrace whatever joy that the day had to offer. In so many ways, she taught me how to deal with my own illness, which progressed continuously through the ensuing years.

Stella didn't waste any time bemoaning her fate, or thinking about what might have been, because she was blessed to simply not have the capacity to do so. As my condition has continued to worsen, I've often thought of Stella, and have realized just how right she had it. Feeling sorry for yourself or worrying about future calamity only serve to poison the present, and the present, the now, and our place in it, is the only thing in the entire universe that we have any real control over. Endeavor to live your life like a Labrador, attack each day like it's a great big rawhide bone sent from the heavens.

Eventually, Stella's illnesses and advancing years got the upper hand; the cancer returned, and my sweet little girl started slipping away. Over the Thanksgiving weekend of 2006 we boarded her at the veterinarians while we visited my mom in Florida, and when we returned the vet told us that Stella's condition had worsened, and he recommended we put her down. He brought her out to us with an IV already inserted into her leg, but upon seeing us I could see that familiar spark in her eye, and she started eating the treats I tried to hand feed her. We decided to bring Stella home, to give her the chance to make one more rally.

By this time I was no longer able to walk Stella, and most of her caregiving fell to Karen. Stella actually did rebound a bit for the first few weeks, but I guess the power of love can only go so far. A few days after Christmas, we brought Stella back to the vet one last time, held her, and said goodbye. Those weeks between Thanksgiving and Christmas became one extra month of bonus life for Stella, during which Karen took Stella to Central Park almost every day, and Stella ate all of the chicken and turkey she wanted.

Stella saw me through many transitions; from Fort Lauderdale to New York, from single to married, from well to Multiple Sclerosis. Aside from my wife, there is no being I have ever felt closer to, or more intimate with. I miss her still, and will for the rest of my days. Karen and I now live in a building that is wheelchair friendly, but doesn't allow dogs. If I somehow beat this thing, first thing we're doing is moving out of this place and getting ourselves a great big pooch, who will take Stella’s space, but surely not her place.

Here's my favorite photo of my pal Stella...

The Trouble Is The Night

Image by Joe Thorn via Flickr

I've always been a night person; left to my druthers, I'd happily keep the hours of Nosferatu. Back in my working days, having to be dressed and in the office by the ungodly hours of 8:30 AM or 9 AM was monstrously inhumane. My brain didn't start functioning until after noon, and about all I could do in the hours preceding midday was to try my best to simulate the actions of a fully conscious person, walking around like Mr. Spock in that episode of Star Trek where aliens steal his brain.

Later in my career, when I went to work in the music industry, many of my coworkers were of the same ilk, and the production studios where I toiled were generally devoid of human activity before 10 AM. I had no problem working late to get the job done, so long as I wasn't required to show up at the crack of dawn (and my definition of dawn includes the hours between 5 and 10:30 AM). The night was when I was in my element, and this still holds true. Most of my blog posting, photoshopping, and video editing takes place well after the sun has dipped below the horizon. Though this keeps me out of step with most of the rest of the world, it is what it is, I am by nature a denizen of the dark. I even met my wife at 4:30 AM.

Lately, though, the nighttime hours have been troublesome. Not so much the nighttime hours, per se, but the hours after I've gone to bed, when I'm left without the distractions which serve to keep me from focusing on my illness and all the damage it has done. When not under the covers, and surrounded by my toys and other people, I'm usually quite able to keep the wolves of the despair at bay. Through mindful choices and a diligent channeling of my attentions and emotions, the psychological ravages of my multiple sclerosis are held at arms length, and though they are never beyond my consciousness, I refuse them the ability to cloud my minute to minute existence with anguish. I recognize my situation, and determine to live my life the best I can despite of it. Though this works better some days than others, in general I'm able to keep my head well above the water.

Once the lights go down, though, and all is still, it is a far more difficult task to corral the thoughts that conspire to mangle my peace of mind. I've always been an insomniac, as a child I remember lying awake for hours, even as the light of a new day gathered in my bedroom windows. Now, with my wife sleeping gently beside me, the psychological barriers I carefully maintain during the day start to crack, and the thought train gathers a wicked momentum and threatens to break loose from its tracks. The void that is left by the momentary lapse of emotional diligence is quickly filled with the whys and why nots, the what ifs and the if onlys.

With my head on my pillow, the Torment Express picks up steam and careens through the furthest corners of my mind. How did I get this fracking disease and could I have done anything to stop it? Is this retribution for some forgotten sin, or am I a merely the victim of a simple but cruel twist of fate? If I'd made different choices, if I'd only caught that missed train, or had stayed in Boston, or somehow stayed true to my youthful dreams and ambitions, could I somehow have avoided this ghastly withering, this slowly watching myself lose me inch by inch and limb by limb?

Where would I be this very moment had I not taken ill? That career that I'd built so steadily, despite my struggles with selling out and my battles with the twin fears of success and failure, only to have the mountain crumble beneath me as I approached the summit of real triumph, where might that have led me? At the very precipice of the next level, I was pushed to the sidelines and forced to watch as others scrambled over the foundations I had built.

My God, the time I wasted, the days and weeks and months and years when I was healthy and had the world at my feet, but kept myself bound and gagged with fears and insecurities, bad habits and stupidity, with envy and jealousy and pride and conceit, turning the infinite possibilities of each and every glorious day into a self-imposed prison of preconceptions and misguided expectations and the absolute folly of self-righteous suffering. That time so precious, so delicate, so priceless, time that slipped away without my making even the slightest effort to catch it, blind to the approaching maelstrom that crouched waiting, just beyond the bend. All of the irreplaceable people and experiences and moments that I took for granted, which no amount of wishing or hoping or wailing can ever recover. Gone for good, consigned only to that box marked "memories"...

And what of all the treatments I've undergone, and all of the doctors I've seen, every one of which has failed me completely, and some of which have left me worse off than when I began? How much damage have they done that has yet to reveal itself, these powerful poisons that I've taken even whose manufacturers cannot say exactly what they do? Is there some missing piece to my puzzle, some missed clue or overlooked anomaly that might decipher this disease that has left some of the best minds in medicine puzzled? Is it too late to alter the ugly endpoint of this disease, or might I still have a chance, a tiny chance at finding my way through this thing, to the other side?

I toss and turn with the force of the thoughts ricocheting around inside my skull. Finally, I silently scream "enough", and slowly stretch my spastic limbs, force my aching joints into motion, and clumsily stumble and drag myself to the bathroom, not so much due to physical need but just a break the inner cycle. Back in bed I grab my smartphone and read the opinion pieces from tomorrow's New York Times. As insane and volatile as the outside world may be, it's a powder puff compared to what lies within. Finally, eyes heavy, I surrender to sleep.

When tomorrow comes, I'll take inventory of my physical status, strap on my armor, and begin the battle anew. Inner demons back in their cages, I'll do my best to make the most of the day, imposing some measure of contentment upon myself, because really, there's nothing else to do...