Still More Bits and Pieces

Image via Wikipedia

Here's yet another collection of MS related items and bits of news that I'd like to pass along to all who are interested. If you're not interested, please feign interest, as my feelings are very easily hurt.

For those expecting another of my essays filled with philosophical musings (mumbo-jumbo?) about life with chronic debilitating illness, no fears, more are on the way. I've got several ideas percolating in my brain pan, but they need just a little more seasoning. In other words, I've been too busy obsessing about my upcoming fantasy baseball league to write them down. I'm all in a tizzy because Chase Utley (the second baseman of the Philadelphia Phillies, as if you didn't know) is going to be starting the season on the disabled list. When will the horrors end?

Anyway, on with the show…

• Gilenya, the new oral MS drug recently approved by the FDA and the European drug regulatory agencies, is derived from a fungus called cordyceps that has been used in traditional Chinese medicine for over 5000 years. The spores of the fungus infiltrate the bodies of insects, turning them into zombies that look for sunny places to attach themselves, where they remain motionless while the fungus matures and finally bursts out of their bodies, eventually releasing more spores to continue the cycle in yet more insects.

  You can't make this stuff up, it sounds like the plot of a science-fiction movie…

  Watch this video, it's truly amazing…

• Last week the first annual meeting of the International Society for Neurovascular Disease was held in Bologna, Italy. On hand were many of the notable doctors and scientists researching CCSVI, and many intriguing presentations were given on a wide variety of subjects related to the "vascular theory of MS". Some of the most notable presentations included the results of a study using CT venography to try to detect venous abnormalities in healthy subjects (only 8% exhibited such abnormalities), a preliminary analysis of the effectiveness of CCSVI treatment on MS patients, the role of CNS hypoperfusion (decreased blood flow) in MS pathology, and the before and after results of venoplasty as seen on functional MRI imaging, among many others. (Click here) to see a list of all of the presentations given, along with links to abstracts of those presentations.

  There's enough here to keep CCSVI junkies busy with several hours of fascinating reading, and as there's nothing more important for a self-advocating MS patient than keeping abreast of the latest research news and information, reading through these abstracts is definitely time well spent.

• HSCT, a stem cell treatment in which a patient's immune system is completely destroyed through the use of chemotherapy drugs, and then "rebooted" by transplanting their own bone marrow derived stem cells back into the patient, has been shown to curtail disease progression, at least in some patients, over the course of a recently released 11 year study (click here). Patients with active inflammation fared best, with 44% of them showing no progression after an average of 11 years. Only 10% of patients without active inflammation (enhancing lesions) saw such success.

  On the downside, two patients (of the 35 study) died as a direct result of the immunoablative chemotherapy used in the regimen. However, in the decade plus since this study was started, the chemotherapy regimen used to ablate the immune system has been refined, and recent mortality figures are almost nil.

  In addition to a halt in progression, some of the patients did see their EDSS scores reduced for a time, but eventually regressed. After three, four, and five years the progression free rates of the treated patients were 80%, so it does appear that the effectiveness of the treatment diminishes with time.

  To my mind, these results raise a fair amount of questions, as they would seem to indicate that the underlying cause of MS is not dealt with even when the immune system is completely destroyed and then rebuilt from scratch. Whatever it is that causes MS, whether it be vascular abnormalities, smoldering viral or bacterial infections (such as EBV, chlamydia pneumonia, or HHV-6), environmental toxins, genetics, or, more likely, a combination of all of the above, is still at work, and eventually causes the immune system to go on the attack once again, at least in over half of the patients studied.

  Intriguing results, to say the least.

• Sativex, an anti-spasticity medication derived from the demon weed marijuana, has been approved in six more European countries, in addition to the UK and Spain, which had previously approved the drug (click here). Canada has also approved the use of Sativex (which is a spray used under the tongue) for spasticity, as it has been proven to be quite safe and effective in combating the painful and debilitating condition in MS patients.

  Spasticity results in stiffness of the muscles, and in extreme cases locks muscles frozen in position. The ailment is the result of muscles receiving nerve signals to contract, but not the signals to relax once again. It is a major cause of pain and disability in Multiple Sclerosis patients.

  Here in the United States, where the powers that be are wise and benevolent enough to protect hapless chronically ill patients from the decadent and debauching effects of any medicine that might be derived from the soul sucking marijuana plant, Sativex cannot even be tested, and instead we are left to take anti-spasticity drugs that in many cases leave patients in a state of extreme stupefaction.

  One such drug, Zanaflex, literally makes my eyes cross with exhaustion about 45 minutes after taking it, and if I'm not in bed about 5 minutes after the crossing of the eyes, I slip into a coma like slumber wherever I happen to be seated. I quite literally crashed forehead first into my computer keyboard when I once mistakenly tried to fight the effects of the medication and finish an e-mail I was working on. But at least my soul is intact, unlike all of those European and Canadian Multiple Sclerosis heathens soaking up the Sativex. Sure hope they have Sativex in hell, because that's where those tens of thousands of spasticity free Sativex hop heads are heading…

• Last, but certainly not least, I'd like to thank my brother, his main squeeze, my three-year-old nephew (their son), and my brother's main squeeze's brother and father, for participating in the Marathon de Ski SP (MS Ski Marathon) up in Montréal, Canada, to help raise funds to fight MS. With my unbearably cute nephew leading the charge, "Team Marc Stecker" won the day, completing about 65 runs down the mountain! My unbearably cute nephew even won a medal, which he was quite proud of. He probably would have been prouder if it was a Thomas the Tank Engine toy, but such are the tribulations of growing up. Incredible that my brother and the gang could accomplish such a feat, especially with all that Sativex stealing the souls of people left and right up there in Canada. Here are some pictures of the winning team…

Bits and Pieces: Back, Once Again

Image via Wikipedia

Here's yet another edition of Bits and Pieces, in which I assemble various MS related (and sometimes non-MS related) materials for your reading and/or viewing pleasure. These are all items which have piqued my interest for one reason or another, which I feel the compulsive need to share with my loyal (or even disloyal) readers. I hope these items pique your interest also, as having one's interests piqued can really be the peak of one's day.

I use voice recognition software to "write" these posts, so in actuality I speak to them, and for some reason I'm experiencing much merriment when speaking the word "piqued", in addition to the fact that I think it's pretty neat that the software is differentiating between piqued and peaked and peeked. Okay, so I had to help it out that with that last bit, but it's entertaining me nonetheless…

Anyway, let's get on with it. Here's a peek at what has piqued my interest over the last couple of weeks. To the right is a picture of a pique peek peak.

• CCSVI stuff: the International Society of Neurovascular Disease convened a meeting of some of the foremost CCSVI experts on March 14-15, in Bologna, Italy. Much important data was presented, including studies on the epidemiology of CCSVI and MS, the role of oxygenation and tissue drainage, the role of iron, advanced diagnostic imaging, the treatment of CCSVI, and development of animal models of CCSVI. Dr. Paolo Zamboni, who first put forth the CCSVI hypothesis, demonstrated new technology designed to improve the ease and accuracy of diagnosing CCSVI, in the form of a collar that can be placed on a patient's neck, which measures the difference in the volume of blood going through the jugular veins when measuring patients in an upright and then supine position. (Click here) for a summary of the conference findings, which will open up as a Word document. In my version of Word, the document opens up in a multipage format that makes it difficult to read. If you experience the same problem, simply go to the "view" menu and choose the "one page" option.

  From March 26-31, the Society of Interventional Radiology (SIR) will hold their annual meeting in Chicago, at which CCSVI will be a major topic of discussion. On the evening of Tuesday, March 29, the CCSVI Alliance will be holding a Doctor's Roundtable Discussion on CCSVI and MS, which will be open to the public. The panel includes a long list of some of the most notable names in CCSVI research and treatment, and the discussion, which will include questions from the audience, should be absolutely fascinating. Anyone in the Chicago area with an interest in CCSVI should make every effort to attend. (Click here) to register for this free event.

• Researchers at Purdue University have discovered that the decades-old hypertension drug Hydralazine may delay the onset and reduce the severity of MS symptoms (click here). The scientists theorize that the drug works by blocking the action of a toxic compound called acrolein, which is found in automobile exhaust and cigarette smoke. Coincidentally (?), a few years ago the anti-hypertension (high blood pressure) drug Lisinopril also showed promise in the fight against MS (click here). Might the action of these two drugs, both of which regulate blood pressure, play into the CCSVI hypothesis? Common sense would seem to indicate so, but common sense would also lead you to believe that both of these drugs, having long ago been proven safe, would at this very moment be undergoing exhaustive testing to ascertain just how effective they could be in treating the scourge of Multiple Sclerosis.

  Unfortunately, both drugs are so old that they are off patent, meaning that they are very cheap and available as generics. Thus, pharmaceutical companies can't make gazillions of dollars marketing them to MS patients. Since most of the medical research in this country is funded by Big Pharma, which only throws money at research that has the potential of turning a huge profit, these drugs have a snowball's chance in hell of being given more than a cursory glance as possible MS treatments. In regards to studies into Lisinopril, the lead researcher, Dr. Steinman, had this to say:

  "Who's going to pay for it?" he asked. A standard proof-of-concept study with about 200 patients would cost in the vicinity of $20 million. ACE inhibitors are as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study, he said.

  The line to the vomitorium starts behind me.

• On a much happier note, many people don't realize it, but service dogs aren't only for the blind. These amazing pooches can be of considerable benefit to disabled MSers, as they can be trained to do a variety of tasks, including retrieving dropped items, turning on lights, pulling wheelchairs, preventing falls, and helping to combat depression. All that, and as part of the package you get a fuzzy best friend for life who will love you unconditionally. For more information, (click here).
• A new online magazine, Atrium (click here), is dedicated to helping shift the thinking of a new generation of doctors and healthcare practitioners in this emerging age of widespread access to information and Internet social networking. These two factors are changing the patient-doctor dynamic, which in turn should change the way that medicine is practiced. Started by two extremely motivated Yale medical students, Atrium features articles, insights, and opinions on a wide variety of subjects, including not only medicine but also art, music, and philosophy. The editors have decided to include some Wheelchair Kamikaze essays in the mix, and I'm honored to have been chosen to represent a patient's point of view. I'd urge everyone to check out this new online resource, skipping over my essays to read the wealth of other fascinating material Atrium has to offer.

• Readers of Wheelchair Kamikaze know of my fondness for photography, and I recently came across the story of Flo Fox, a photographer who was born partially blind and later developed Multiple Sclerosis, which robbed yet more of her vision as well as her mobility. In the 1970s, Flo Fox was a personality in the edgy downtown New York art scene, and had gallery and museum shows around the world. She rubbed elbows with Andy Warhol, appeared on late night talk shows, and was even featured on "Live, with Regis and Kathy Lee".

  By pure happenstance, Flo Fox appeared in a 2010 documentary about Joan Rivers, when Ms. Rivers delivered food to Fox's apartment while doing volunteer work for the group God's Love We Deliver. Now in her 60s, Fox lives in housing for the blind, but maintains her moxie and mischievous spirit. Looks like I'm only following in her wheel tracks, as it seems like Flo Fox was the original Wheelchair Kamikaze. (Click here and here) for more on the Flo Fox story, and feast your eyes on the videos below, one of which is a montage of her photos of 1970s New York City set to some very cool music, and the other a clip of her appearance with Regis and Kathy Lee, circa 1983.

What Does MS = To You?

March 14-20 is "MS Awareness Week", and the NMSS has sponsored a "MS =" program (click here), asking folks to describe what MS means to them in 60 characters or less.

Here's my go at it.

MS = WMD

· Weapon of Mass Destruction (of course).

· Watch Me Deteriorate.

· Withering Muscles Disobey.

· Waves of Money for Druggists.

· Way too Many Doctors.

· Waylaid by My Destiny.

· Waning Memory Disappears.

· Why Me, Dammit?

· Weight of Monstrous Desperation.

· Walking, My Desire.

· Wretched, Miserable Diagnosis.

· Wishing Makes no Difference.

· Waiting for More Disability.

· Wrecking My Dreams.

· Weakening More Daily.

· Wisdom of Mindful Defiance.

· Wanting More Defenses.

· Whip My Disease!

· White Matter Demolition.

· Where is My Deliverance?

· Welcome to the Minority of the Disabled.

· Willfulness Massacres Despair

· Wellness Merits Determination

Okay, that's a start. Let's make this an interactive activity. Please contribute your own "MS =" using words with the first letters W, M, and D in the comments section, and I'll add it to the list, with an attribution to your screen name. It will be like a regular Wheelchair Kamikaze funfest, except, you know, MS isn't really all that much fun…

· When Myelin Dies (submitted by Judy)

· Why My Dearest? (submitted by Debra, caregiver)

· i Want My Damn life back (submitted by Cutter)

· What, Me Disabled? (submitted by Corey, my brother)

· Winging My Diagnosis (submitted by YankeeQuilter)

· Will Make Do (submitted by Team)

· Wishing Makes Despair (submitted by Dabble and the Mad Sow)

· Wanting More, Dammit (submitted by Dabble and the Mad Sow)

· Waiting for More Direction (submitted by Kim)

· Wishing Me was Desirable (submitted by Kim)

· Waning Muscles Decrease (submitted by Kim)

· Walking Made Difficult (submitted by Nicole)

· Wife, Mother Destroyed (submitted by Tam D)

· Why MS Discrimination?-in regards to CCSVI (submitted by Carol)

· Watch Me Deteriorate (submitted by Roberta)

· While Men Debate (submitted by Roberta)

· Why Me, Dieu? (submitted by Roberta)

· Will Medicine Deliver? (submitted by Roberta)

· Will Miracles Develop? (submitted by Roberta)

· Watch… Muse… Dream (submitted by Roberta)

· Watching Michael Dake-noted CCSVI researcher (submitted by Anonymous)

· Who, Me Doomed? (submitted by Scott)

· Where's My Dexterity? (submitted by Scott)

· What's My Destiny? (submitted by Scott)

· What, Me Depressed? (submitted by Scott)

· When My Dog helps (submitted by MSbeyondmeds)

· What a Miserable Disease (submitted by Gina)

· Why Me, Dear God? (submitted by Heidi)

· Watch Me Decline (submitted by Heidi)

· Why I Mess up Daily (submitted by Heidi)

· When Muscles Degenerate (submitted by Heidi)

· Will be My Day (submitted by Jamie)

· Whipping My Diagnosis (submitted by Jamie)

· Whispering Medical Dungeon (submitted by Jamie)

· Winning May be Differential thinking (submitted by Jamie)

· Will Master my Disease (submitted by Jamie)

· Waxing My Dependence (submitted by Carolyn)

· Wise Mind Developing (submitted by LauraX)

· Women <, Men >, Disability + (submitted by Cindy)

· Whip My Derrière (submitted by Tricia's husband husband)

· Withering More Daily (submitted by Tricia)

· What's My Disease? (submitted by Pasopati)

· Watch My Doom (submitted by Pasopati)

· Wrong Motherfucking Diagnosis (submitted by Pasopati)

· Write off My Doctor (submitted by Pasopati)

· Want More Drugs (submitted by Pasopati)

· When Myself Died (submitted by Swamp Granny)

· Word Melt Down (submitted by Swamp Granny)

· Worthless Mindless Dialogue (submitted by Swamp Granny)

· Whole Mind Damage (submitted by Swamp Granny)

· Worthless Mind Dump (submitted by Swamp Granny)

· Worthless Mind Demeanor (submitted by Swamp Granny)

· Whole Mind Disaster (submitted by Swamp Granny)

· Wholey Myself Damned (submitted by Swamp Granny)

· Whole Mind Defeat (submitted by Swamp Granny)

· What Me Dunno (submitted by Swamp Granny)

· Whoa, MS Darlin' (submitted by Webster)

· Where's My Deliverance? (submitted by Tuna)

· Willful Malingering Denial (submitted by Pasopati)

· Well, Modify D'Plan (submitted by Barry)

· Whittling away My Dreams (submitted by Patti)

· When Me Disappears (submitted by Ms Andisue)

· What will My family Do (submitted by Anonymous)

· Waiting for My Defeat (submitted by Anonymous)

· Watch My Doddering (submitted by Anonymous)

· Wicked Muscle Disease! (submitted by Sparkysmom)

· Watch. Me. Do (this). (submitted by rossandconnierockon)

· Worrying about My Dad (submitted by Becky)

· Wondering with My Dad (submitted by Becky)

· Walking for My Dad (submitted by Becky)

· Will MS Disappear? (submitted by Becky)

· Wandering Motionlessly Devoid (submitted by Anonymous)

· Wasting My Dreams (submitted by Anonymous)

· Worrying about My Dad (submitted by Becky)

· Watch My Defiance (submitted by Sandy)

· Withering My Dialogue (submitted by Maria)

· Wretched Mortifying Demon (submitted by bestadmom)

· With Many Defects (still loving life) (submitted by Anonymous)

· Why My Daughter, too? (submitted by Sharon)

· Weirdly Malfunctioning Defense (submitted by Barb)

· Wits Mostly Devoured (submitted by Barb)

· Wellness Made Discomfiture (submitted by Barb)

· Woman's Moxie Devastated (submitted by Barb)

· What Monstrous Drivel (submitted by Barb)

· Wretched Maniacal Devil (submitted by Lisa)

· Worst Motherfucking Disease (submitted by Lisa)

· Weird Morbid Descent (submitted by Lisa)

· Witness My Devolution (submitted by Lisa)

· What? My Demotion! (submitted by mscellenea)

· Waiting on My Deliverer! (submitted by Kimmy)

· Woe to Many Doubters… (submitted by Kimmy)

· Wasting My Days! (submitted by Kimmy)

· Weakening My Demeanor. (submitted by Kimmy)

· Wanting My Dad! (submitted by Kimmy)

· Warrior of Much Damage! (submitted by Kimmy)

Deconstructing Marc

Image via Wikipedia

Multiple Sclerosis is an undeniably destructive force. To various degrees, which change from patient to patient, the disease picks apart bodies, careers, and relationships, intent on scrambling the numberless pieces that make up the jigsaw puzzle that is each human being it touches. As the malady disrupts a patient's physical body, it also forces those afflicted with it to deconstruct themselves emotionally, spiritually, and philosophically as they adjust to the changes wrought by MS. But this deconstruction also forces the patient into a reconstruction, as they gradually shed the self-identifications and the societal expectations that had formally defined who they were, and replace them with a new sense of self that conforms to the ever-changing reality of living with a chronic, progressively disabling illness.

The speed with which this process occurs varies dramatically from individual to individual, as the mutable nature of MS means that no two patients experience in the disease in quite the same way. Some can live with the sickness for decades and suffer relatively few setbacks because of it. For these folks, the changes within may be as subtle as the disease itself, barely visible on a day-to-day basis, but more apparent when looked back at from year to year or decade to decade. Other patients, like myself, are hit hard by a more aggressive form of the illness, and adjusting to the physical and mental challenges it imposes requires almost daily manipulations of the mind and body. MS demands a metamorphosis, not only from physically able to physically disabled, but from who we were to who we are becoming.

Every person, sick or well, goes through fundamental changes over the course of a lifetime, molded by mounting age and experience. Chronic disabling disease acts as a multiplier for this universal experience, compressing the time span and focusing the intensity of adjustment. The eight years since my diagnosis have seen me undergo changes of seismic proportion, as the landscape of my inner and outer lives have been rocked to a degree I hardly thought possible. Just as residents knowingly living in an earthquake zone are nevertheless shocked when the ground shifts and buildings tumble, people shaken by serious illness are stunned by their being hit with adversity, although we are all aware, even if in the most abstract sense, that accidents, illness, and misfortune are tripwires strung haphazardly across the road of life. Multiple Sclerosis is the kind of horror that happens to other people, we think, not to us. It's a comforting delusion.

After absorbing the initial shock of my diagnosis, for a while life proceeded on almost as if everything were normal. My internal dialogue was changing, as questions about my new disease and the impact it would have on my future were always being sifted, sometimes consciously, sometimes tucked away in the mind's recesses. Initially, my daily routine hardly changed, just as most of those aboard the Titanic, having registered the initial shudder of the ship hitting the iceberg, drank their aperitifs and danced their waltzes, for a few minutes anyway. I got up every day, kissed my wife, showered and dressed, walked the dog, and went to work. There were the usual dinners out, shopping on weekends, socializing with friends. Yes, there was an injection to give myself every few days, but even that held the promise of a sustained normalcy and helped maintain the illusion of control. Soon though, the ship started taking on water; the slight limp in my right leg got worse, and my right arm became progressively weaker. The descent had begun.

Just as my physical disabilities all too soon demanded attention (an ankle brace, a cane), my sense of self screamed out for contemplation. What had sometimes been a swagger now became a foot dragging limp, the dearly held illusion of immortality replaced by the reality that I was now physically defective and was very likely only going to become more so. I wore a brave face, proud of the fact that my performance at work didn't falter, even as my body did. My well practiced neurotic antics suddenly didn't seem so endearing, and the worries and anxieties that had once consumed me were now rendered trivial, as if a Woody Allen character were dropped into a concentration camp.

This was a new and frightening world I was abruptly required to navigate, filled with its own jargon and customs, a foreign realm of doctor’s appointments, medical procedures, and ever-increasing physical weakness, a place of changed priorities and heartfelt losses, a domain that imposed humility and was best traversed with a keen sense of the absurd. Thrust into this Twilight Zone, I was a character in search of a script, learning my lines on the fly, the psychological and philosophical square pegs that had conformed neatly into the cutouts of my former self now being forced to fit into round holes, requiring them to either be whittled into shape or simply discarded. This disease of the body was also a crisis of the soul, but through the churning turmoil I started to glimpse flickers of clarity, faint at first but soon better defined.

A key moment came when, less than four years after my diagnosis, the disease forced me to go on disability and "retire". Although this cleaving from the working world was jarring and disorienting, it didn't seem as hard for me as it does for some others I've known who've endured a medically forced retirement. Despite the fact that I had achieved a respectable level of success in a highly competitive business, I'd never felt entirely comfortable in the roles I played during my career. I always liked telling people what I did ( TV, video, and DVD production) more than I liked actually doing it, and there were long stretches of my working life during which I felt I had strayed entirely off of my path, though I wasn't sure what that path might be.

I'd always had literary and creative aspirations, and the everyday grind of life working within a corporate organization, even one dedicated to creative endeavors, was at best an ill fit. As a youth I'd sworn that I would never get drawn into the workaday world, but like so many who make such declarations, circumstances dictated otherwise. Now, although the details certainly were less than ideal, I found myself free, somehow liberated in spirit by the very thing I dreaded most, the insidiously increasing physical disability that was imprisoning my body.

In a case of addition by subtraction, in being forced to let go of the old me I was able to discover the person that lurked within, the person who I might yet be, long buried under years of socialization, expectation, responsibility, and requirement. Like a chef preparing a reduction, intensifying the flavor of a liquid by boiling off its excess, I found that the forced process of peeling back the layers of the person I had become allowed me to find within a truer self, the me that had fed the simmering yearning I'd felt for most of my adult life.

Somehow, Multiple Sclerosis (or whatever I have-click here) thrust me, quite violently, onto a path I'd long given up for lost. I often wonder whether or not I would have still been stricken by MS if I'd had the guts and fortitude to find or fight my own way back onto my path, or if the disease was a hammer blow delivered by a universe intent on getting me back on track. Either way, though I despise the disease and the physical toll it continues to take, I like the person I've become much more than the person I was not so long ago.

It would be nice if the disease would relent long enough for me to fully explore and enjoy this new old road, but over that I have little governance. I can advocate for and educate myself, but the actual healing is out of my hands. The only control I do have is to take the journey moment by moment, focusing on the good contained within each passing now, and accepting the bad as a particularly unpleasant traveling companion. With each day there is night, with each peak there is valley, for every gain there must be loss. Such is the way of nature; such is the way of life…

Link to Blogtalk Radio Show on CCSVI

This past Monday night, I appeared on the Blogtalk Radio Internet program "CCSVI-Been There, Done That". The show featured a range of guests relating their different experiences with the CCSVI treatment procedure. The patients profiled represent a cross-section of the possible outcomes of CCSVI venoplasty, including some who saw tremendous benefit from the procedure, some who saw benefit but then restenosed, and others who saw no benefit at all. It avoids the controversy surrounding the CCSVI hypothesis itself, and puts a very human face on MS and the promise of CCSVI.

Hosted by the gracious and ever genial Amy Gurowitz, the program provides valuable patient perspectives from some who have undergone the CCSVI treatment procedure. I might be a little bit biased, as I was one of the guests, but I honestly think the program is an important listen for anyone considering CCSVI treatment. Please click the play arrow on the handy dandy interface below to listen to the show…

Edited to add: I've been getting word that some people are having trouble with the Blogtalk Radio interface, above. It works fine on my browser, but sometimes these things can be finicky. Be advised that the first minute and thirty seconds or so of the program are a commercial and then some introductory music. To play the program, you have to click on the white arrow symbol on the left side of the interface.

If the interface continues to malfunction, you can access the program directly from the Blogtalk Radio website (click here). Once on the website, scroll down until you get to the "CCSVI-Been There, Done That" section, at the bottom of which you'll find clickable buttons to play the program, along with some other options.

Sorry for the inconvenience, hopefully everyone who wants to listen to the program will be able to by either using the above gizmo, or going directly to the Blogtalk Radio website. Thanks.

Monday, March 7, 8 PM EST - CCSVI on Blog Talk Radio

Image via CrunchBase

I'll be joining host Amy Gurowitz and five other MSers who have undergone the CCSVI treatment procedure for a two-hour netcast of her show "MS-LOL: Multiple Sclerosis-A Life Of Learning", discussing our experiences and swapping information on the topic, this Monday, March 7, at 8 PM EST. (click here for Blog Talk Radio page). Listeners will be encouraged to call in and ask questions, so you can participate in the show. All the necessary info is included on the website linked to above.

Amy Gurowitz is an MS patient herself, and heads up the Internet-based MS education nonprofit "MS Soft Serve" (click here). In addition, Amy maintains a blog, (click here) which details her monthly radio show and also includes her take on living life with MS.

I've recently been working with Amy on a couple of MS advocacy related projects, and she's a super intelligent, very compassionate, and genuinely nice human being. I'm excited about my invitation to participate in her show, and hope WK readers won't be shy about calling in with their CCSVI related questions.

Speak to you Monday…

To see a list converting the time of the show to your local time, please (click here)

CCSVI: Trying to Take the "Hyper" out of “Hyperbole"

Image by soukup via Flickr

Over the last several months, many of the Internet MS forums, chat rooms, and social networking sites have become places of sometimes heated conflict, in large part due to the extremes of emotion brought about by the topic of CCSVI. In general, open debate is a good thing, as it allows for the formation and refining of informed opinion, but in some cases, on both sides of the argument, I've seen statements presented as fact which simply aren't so, and an escalation of rhetoric that rather than adding clarity to the issue begins to obscure it.

Given the potentially dreadful outcomes of Multiple Sclerosis, and the raw emotion that such prospects engender in those that suffer from the disease, it's not surprising that disagreements can often become heated. As regular readers of this blog know, I believe there is much merit to the CCSVI hypothesis, but I'm also cognizant of the fact that the theory is likely not THE one and only answer for the majority of MS patients. For a select few it may be, but for most it is likely a piece of a very complex puzzle; just how large a piece has yet to be determined. Here then, are some of the more commonly seen hyperbolic statements made about the CCSVI and its ancillary topics, and an attempt at taking a reasoned approach to them.

"CCSVI cures MS/CCSVI is a hoax" - these are two sides of the same coin, the utopian/dystopian opinions on the subject. Let's take a look at the negative statement first, as it borders on the truly ludicrous.

When the CCSVI hypothesis first surfaced in the mainstream MS community, roughly 18 months ago, several prominent neurologists and representatives of the MS societies went on record stating that the theory had no validity whatsoever, and that patients were foolish to be wasting their time, emotion, and money pursuing the issue. These statements were made, I suppose, based on an instinctive defense of territory, and a very rigid adherence to traditional MS dogma which states that MS is an autoimmune disease confined to central nervous system, caused by an immune system that, for reasons unknown, has taken to attacking a patient's own cells. Unfortunately, this autoimmune model of the disease, which has held sway for over two decades, has done little to advance the cause of curing MS. It has, though, led to the production of a family of high-priced drugs that modulate or suppress the immune system which do increase the quality of life for a percentage of the patients taking them, but do absolutely nothing by way of offering a cure.

One would think that MS neurologists, as scientists devoted to unraveling one of the most cryptic of medical puzzles, would have their interests piqued by such an outside the box take on the disease. Instead most turned their noses up to it as if it were a lump of feces served on a dinner plate. I can find no logical defense for this stance, as, with the best interests of their patients in mind, the MS establishment should have urged effective trials of the CCSVI hypothesis to be undertaken with great haste, to either prove or disprove CCSVI as quickly as possible. If proven right, the doubters could have quickly put a stake in the heart of CCSVI and moved on; if proven wrong, they would have ample reason to reassess their position and let the revolution begin. Either way, although the majority of evidence in favor of the hypothesis was and still is mostly anecdotal, the promise of a safe and effective new treatment and the potential of an entirely new way of looking at MS, developed by a reputable physician, should deserve serious scientific consideration.

On the flipside, some of the most fervent CCSVI advocates portray the hypothesis as a breakthrough cure for MS, a viewpoint that, while possible, simply isn't supported by the weight of the currently available evidence. A growing body of anecdotal reports certainly indicates that clearing blockages in the CNS associated veins of some MS patients provides relief of symptoms, but the degree of relief varies widely from patient to patient, and a signifiant number of patients experiences no relief whatsoever.

Although this lack of effectiveness of CCSVI treatment in some patients is of course disappointing, it really shouldn't be surprising, as we do know that MS presents itself very differently from patient to patient, and gets increasingly more difficult to treat the longer the duration of the disease. Different subpopulations of patients almost certainly have different disease triggers, and there's the distinct possibility that what we call Multiple Sclerosis isn't really one disease at all, but rather a collection of similar diseases that share symptomatic and diagnostic profiles. Vascular issues may play a large part in the disease of some patients, but a much smaller role, or no role at all, in the disease of others. There is still much to learn about CCSVI, and we don't yet even know the prevalence of the venous abnormalities collectively known as CCSVI in the healthy population. Stating anything about CCSVI, pro or con, with unequivocal certainty only sets one up to be proven wrong.

"MS is a vascular disease! Neurologists should step aside!" - It's easy to understand the frustration that many patients have with their neurologist, and neurology in general, over the CCSVI issue. Though one wouldn't expect neurologists en masse to wholly embrace the theory, the ham-fisted stonewalling experienced by many patients at the hands of their doctors has quite understandably left many angry and disgusted. Still, even in a best case scenario in which CCSVI proves to be a major key to unlocking the MS puzzle, neurologists would continue to have a major role in treating the disease. In such a rosy scenario, two possibilities present themselves: MS is a vascular disease with neurologic implications, or it is a neurologic disease with vascular implications. In either case, neurologists would remain a significant part of the picture.

Many of the interventional radiologists (the physicians who perform the CCSVI treatment) I've talked to describe themselves as medical plumbers. Their specialty is unblocking and fixing defective veins and arteries. They readily admit to having little or no knowledge of the neurologic implications of the venous abnormalities they're encountering in MS patients, they are simply attempting to fix what they see as broken vasculature and disrupted blood flow. Time and time again, the IRs doing CCSVI treatment have called on neurologists to join them in an interdisciplinary investigation of the hypothesis, for the very reason that the expertise possessed by neurologists is necessary to unravel all of the questions surrounding CCSVI.

As noted above, many MS patients are proving to be non-responders to CCSVI treatment. Their stories aren't heard much on MS forums or Facebook pages, and very few are making YouTube videos saying, "Look at me, I'm a CCSVI loser", but there are many MSers who have undergone venoplasty and experienced little or no benefit. I receive a steady stream of e-mails from some of these patients, perhaps because I too underwent the procedure but didn't experienced benefit (not that this has soured me on trying again, as I consider my procedure a "successful failure" (click here), and I expect to give it another go within the next few months).

Certainly, for patients who don't respond to CCSVI, neurologists will continue to play the primary role in treating their disease. Even in the case of CCSVI "hyper responders", in whom the treatment procedure works wonders, neurologists will be responsible for monitoring and treating the residual neurologic damage that will almost inevitably remain even if their disease has been eliminated. Unless caught in its earliest stages, MS does damage to nerve cells, which have little capacity for healing. Once damaged beyond a certain point, cells in the CNS do not regenerate, which is why those who suffer brain or spinal cord damage due to accidents or stroke rarely recover all of their lost abilities. MS patients with significant long-term mobility and/or cognitive issues would be left with serious neurologic deficits even if the MS disease process could be completely stopped by addressing their vascular issues. The advancing science of neuroprotective and neuroregenerative medicine falls squarely in the province of neurology. Therefore, like it or not, neurologists will remain a prominent part of the MS picture, regardless of the eventual success or failure of CCSVI.

"All trials done by researchers with connections to pharmaceutical companies should be disregarded" -On its face, this statement would seem to make sense due to the perceived conflict of interest of the researchers involved, and it's become the rallying cry against all published research with negative implications for CCSVI. The typical reaction sequence goes something like this: someone will post news of a research report critical of CCSVI on an MS forum, and within minutes other posters will report on the pharmaceutical company ties the researchers behind the report inevitably have. Case closed, the researchers were biased, and the trial results should be relegated to the trash heap.

The unfortunate truth, though, is that if all medical research done by investigators with ties to Big Pharma were to be disregarded, there would be practically no medical research left to ponder. The tragically dysfunctional medical research model that has evolved in the past several decades relies on Big Pharma to fund the vast majority of medical research trials. Furthermore, the tentacles of Big Pharma reach far and wide, their suckers touching almost all researchers and research facilities. The only entities completely untainted by pharmaceutical moneys are government and some academic facilities, both of which are woefully underfunded given our deficit laden government and the economic limitations of privately funded academia.

Given such a research milieu, it's almost impossible to find late stage medical research that is free from the taint of pharmaceutical financing. Almost all prominent researchers will have at some point in the careers been associated with pharmaceutical or medical device companies. This includes the heroes of CCSVI, the interventional radiologists. Just as there is stiff competition among pharmaceutical companies to woo neurologists to prescribe their immensely profitable drugs, medical device companies compete to get physicians to use their catheters, angioplasty balloons, and stents. Such are the realities of a medical industrial complex that feeds on the plight of patients. Let's not forget, too, that there is potentially a tremendous amount of money to be made treating CCSVI. The profit motive cuts both ways. We are already seeing the beginnings of aggressive marketing campaigns being conducted by CCSVI clinics in competition for patients, a development that will likely only increase as time goes on.

"Throw out your MS drugs; they're all snake oil and poison" - I'm no fan of Big Pharma and many of the products they produce. As for-profit public corporations, the big pharmaceutical companies are legally mandated to be beholden to their shareholders, not to the patients who take their products. Thus, the primary goal of any pharmaceutical company CEO is to increase their company's bottom line, a goal that is often at odds with that of finding cures, the development of which would effectively eliminate the consumer base of the company’s products. Multiple Sclerosis is now an $8 billion a year industry, and MS patients on disease modifying drugs have become indentured servants to the companies that produce MS medications.

That said, the current crop of MS drugs do increase the quality of life for a significant percentage of the patients taking them. No, they do not cure the disease. It is uncertain as to whether or not they even slow the progression of disease, as research can be found to support both sides of this issue (for "con" click here, for "pro" click here, here, and here). They do, however, cut down on the relapse rates of patients with relapsing remitting disease, in some cases to a dramatic degree. Since MS relapses can leave a patient incapacitated or days, weeks, or months, relief from them is no small achievement. This benefit does come at a potential price, as all of the MS drugs carry with them a wide range of side effects, and it seems the more effective a drug is, the more horrendous its potential side effect profile becomes. Still, many patients refuse to come off of these drugs despite the risk involved, due solely to the vast improvement they've seen in their quality of life as the result of having taken them.

Twenty years ago, MS was a "diagnose and adios" disease, one which physicians had almost no weapons to combat. For patients with RRMS, that picture has changed dramatically, even if the drugs now available are flawed, some deeply so. Progressive patients still have very little in the way of effective therapies, and their treatment options remained primarily those of basic symptom management.

MS is a terrible disease, a hateful and frightening thing that those who suffer from it, and those who love them, universally detest. My fondest desire is to see CCSVI fulfill its potential. But raising the bar to impossible heights, or making well-intentioned but reckless statements may only serve to impede the progress of CCSVI advocacy. Hope is a wonderful and vital commodity, but in matters so precious, it must be tempered by reason.

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I've recently been working, along with several other MS bloggers, with a healthcare advocacy website called WEGO Health (click here). WEGO Health is conducting a study on people’s use of new technologies for health and they need your voice to understand the potential of technology to empower patients.

The survey will take about 10 minutes (you can stop anytime & come back later). All completed survey responses will be entered into a drawing to win an iPad, one of three iPod Touches or one of 200 iTunes gift cards. Everyone will receive a report on our survey findings.

This survey is only open until Friday, March 4, so if you'd like to help, please do so soon.

To take WEGO Health’s Health Technology Survey (click here)

The Misdiagnosis of Multiple Sclerosis, and the Mystery of Me…

Image via Wikipedia

As most patients know, diagnosing Multiple Sclerosis is no easy matter. Despite sophisticated diagnostic tools and techniques, such as MRI imaging, spinal fluid analysis, and visual and sensory evoked potentials, the diagnosis of MS remains one of exclusion, meaning that other likely diseases must be eliminated before a conclusive diagnosis of MS can be made. There is no test or tests that can definitively determine whether or not a patient is suffering from MS. There are indicators that are strongly suggestive of MS, such as brain and/or spinal cord lesions seen on MRIs, and oligoclonal bands (O-bands) in the Cerebrospinal Fluid, but even the presence of these does not guarantee that a diagnosis of MS is correct.

Although MRIs can detect lesions in the CNS, they can't determine specifically what those lesions are, as a tumor and an area of demyelination can often look much the same on an MRI image. Therefore, a subjective determination of the nature of any lesions found must be made by a radiologist or neurologist. O-bands in the CSF indicate immune activity in the CNS, but they are not specific to MS, as other conditions can also create them. A relapsing remitting course of disability onset is highly suggestive of Multiple Sclerosis, but this too does not rule out other disease possibilities, and some MS patients present with a progressive course of the disease. In the book " Multiple Sclerosis: Diagnosis, Medical Management, and Rehabilitation", neurologist P. K. Coyle writes:

"… early accurate diagnosis is critical. It guides optimal therapy, removes uncertainty, allows informed planning, and improves the patient's sense of well-being by providing an explanation for their problems. Unfortunately, the misdiagnosis rate for MS approximates 5% to 10%, even by experienced healthcare providers"

In an effort to cut down on the number of misdiagnoses, in 2001 a set of diagnostic guidelines was developed, called The McDonald Criteria (click here), that attempts to quantify the test results and clinical presentations necessary for a definitive diagnosis of each of the various forms of MS. In 2009, however, I took part in a study at the National Institutes of Health (the United States government's medical research facility) that was designed specifically to look for patients with Clinically Definite Multiple Sclerosis (more on my experience in the study later). The NIH undertook this study because they had found that the rate of misdiagnosed patients recruited for their MS research studies was at least 10%, and the data from these patients was polluting their research results. The doctors at the NIH were attempting to identify a pool of patients that they were confident actually have Multiple Sclerosis for use in future studies.

There are many diseases and conditions that can be mistaken for MS, including Lyme Disease, Hughes Syndrome, Primary Lateral Sclerosis, Neuromyelitis Optica, Vitamin B12 Deficiency, and Lupus, to name a few. The paper "The Differential Diagnosis of Multiple Sclerosis" (click here) gives a comprehensive overview of the many red flags that doctors must look for when diagnosing MS, and includes a list of 100 diseases that can be misdiagnosed as MS. Another valuable paper on the topic, "Differential Diagnosis of Suspected Multiple Sclerosis: a Consensus Approach" (click here) provides a list of symptoms that should lead a physician to question a diagnosis of MS, and discusses four of the diseases most likely to be misidentified as MS.

If you have reason to question your diagnosis, the above materials can be invaluable. However, be careful not to drive yourself crazy with the information they contain, as they provide so much data that it's very easy to convince yourself that you've been wrongly diagnosed. Even with a misdiagnosis rate of 10%, the vast majority of patients have in fact been given the correct diagnosis.

My own case illustrates the difficulties involved with reaaching a conclusive diagnosis of MS, to the extreme. I had doubts about my diagnosis almost from the day I received it. Although my initial presenting symptom (a slight limp) was very typical for someone with PPMS, the more I read up on the disease, and interacted with other patients who had it (mostly online), the less convinced I became that the diagnosis was correct. I'd been having strange symptoms for years (antibody-based thyroid disease, possible discoid lupus, a variety of endocrine problems ) and my MRIs showed only two lesions, a tiny one in my brain, and a larger, much more invasive lesion at the base of my brainstem. In addition, my spinal fluid results were always normal, showing no O-bands.

As time went on, my disease continued to behave strangely, initially attacking only my right side. Despite the relentless progression of my disability, my MRI images never changed, and haven't to this day. They still show only those same two non-enhancing lesions, which haven't changed in size or shape since they were first seen over eight years ago. My MRI images from 2003 look exactly like the ones I had taken last month, but compared to 2003, I'm now a physical wreck. I switched neurologists one year after my diagnosis, and my new neuro also initially suspected that I might not have MS. I underwent a comprehensive series of tests and scans trying to uncover an alternate culprit, all to no avail. Everything came back negative, and, since MS is a diagnosis by exclusion, the only candidate left standing was Primary Progressive Multiple Sclerosis. So, I was left with the label "atypical PPMS".

Never one to settle for something I wasn't sure of, especially something as important as the diagnosis of a progressively crippling disease, I set about on a quest for second and third (and fourth) opinions. I visited infectious disease doctors who specialized in Lyme Disease, but very specialized blood tests came back negative. I scheduled an appointment at the Johns Hopkins MS center, in Baltimore, and was examined by Dr. Peter Calabresi, one of the biggest names in MS research. He too found my disease presentation strange, and ordered an extensive series of tests, which included the taking of over 30 vials of blood (yikes!), but these too all came back negative. So, Johns Hopkins also concluded that I have "atypical PPMS". "How atypical does a disease have to be before it's not that disease?", I asked to all who would listen, but never really got a good answer.

My primary neuro, Dr. Saud Sadiq, who is himself a highly regarded physician, occasionally sent me for various tests and poking and prodding, just to check that we hadn't missed something. Always, the results came back negative. I kept in touch with Dr. Calabresi from Johns Hopkins, and two years after he first examined me, I sent him some of my latest MRI images, which looked exactly like my old MRI images, and told him that my disease had progressed significantly. As this seemed extremely strange, he asked that I come down for another examination. After another neurologic workup, Dr. Calabresi concluded that he had strong doubts that I had MS, but couldn't figure out what it was I did have. He suggested I might have a mitochondrial disorder, or Sjogren's disease. Off I went to see one of the most noted mitochondrial disease specialists in the states, who quickly determined that my mitochondria were fine. I had a lip biopsy done looking for Sjogren's disease, but, of course, it came back negative…

It was then that I learned of the study being done at the NIH, which cast a wide net looking for MS patients to examine, trying to find a sizable pool of candidates that the NIH researchers could be confident had Clinically Definite Multiple Sclerosis for use in future studies. At first they were reticent to accept me into the study, as they generally weren't taking patients more than a 2 hours drive from their facility. New York City is about five hours from the NIH campus in Bethesda, Maryland, just outside of Washington DC. When I sent them the details of my case, though, the staff became intrigued, and asked me to join the study. In all, I made four trips to Bethesda, and went through every test the NIH Neuroimmunology team thought was appropriate. At first, they too labeled me "atypical PPMS", but in the end, they decided that I most likely do not have MS, as I certainly didn't fit any of the existing diagnostic criteria. They could not come up with a suitable alternate diagnosis, though, leaving me as something of a medical mystery (click here for a WK post I made about this at the time).

Interestingly, the NIH did raise the possibility that my disease could be ischemic in nature, meaning that it might have something to do with my circulatory system. So, I pursued CCSVI treatment, which did show an atypical blockage of my right internal jugular vein. I hate that word, atypical. Instead of the blockage being inside the vein, as is typical and usually caused by a valve problem, stenosis of the vein wall, or an anomalous membrane, my blockage appears to be caused by a muscle outside of the vein pinching it partially closed. Balloon angioplasty couldn't open this blockage, and the use of a stent would be quite dangerous, because the pressure put on it by the muscle pressing on my vein would lead to a high likelihood of stent fracture. I hope to undergo a second procedure some time in the next several months, to look for other blockages and see if there might be a way to address the atypical (ugh) blockage already found.

My primary neurologist says he still can't rule out a highly atypical case of PPMS, though he acknowledges my case is quite odd. Since MS is a diagnosis by exclusion, and we've been able to exclude practically every other possible cause for my condition, I suppose "atypical PPMS" it is. So, I still self identify as an MS patient.

Whatever you choose to call my disease, it's giving me a good ass whuppin'. My neuro and I (okay, maybe just I) have come to an understanding about the label, though: In my case, PPMS stands for the Peculiar Paralysis of Marc Stecker.

How atypical…

CCSVI Video: Interview with Dr. Paolo Zamboni and Dr. Jack Burks

Sorry that things have been quiet here on Wheelchair Kamikaze for the last week or so, but I've been battling a bit of a bug. I hope you'll enjoy the following tasty tidbit of CCSVI information…

Here's another video sponsored by the CCSVI Alliance (click here), and edited by yours truly. It features an interview with the "father of CCSVI", Dr. Paolo Zamboni, and Dr. Jack Burks, an MS Neurologist who is the Medical Director of the Multiple Sclerosis Association of America. The interview was recorded on 01/17/11 in Miami Beach, Florida, at the International Symposium for Endovascular Therapy. Conducted by Sharon Richardson, the President of the CCSVI Alliance, the interview features Dr. Zamboni in person, and Dr. Burks joining via audio teleconference.

One of the biggest hurdles facing CCSVI researchers has been the reluctance of neurologists to get behind CCSVI trials, but this situation now seems to be shifting, and hopefully some much-needed interdisciplinary cooperation will be forthcoming. As is illustrated by the discussion in this video, CCSVI research is in its early infancy, and we've only scratched the surface on what needs to be learned. Momentum is building, though, and the next 6-12 months should bring much revealing data, as a host of trial information is scheduled to become available. Not soon enough for patients suffering from MS, I know, but we are getting there, slowly but surely.

And now, on to our featured presentation…

Thank You!

Thanks to your votes, Wheelchair Kamikaze has won medGadget.com's 2010 Best Patient Blog award (click here). WK also won the award in 2009, which proves one thing beyond any doubt: medGadget must have some kind of serious worm or virus infecting their vote counting computers.

All jokes aside, I am extremely grateful for the support readers have given this blog, not only by voting for it in the medGadget contest, but by commenting on the observations and information I post, introducing the blog to friends and family, and reaching out to me through e-mail. I'm genuinely sorry if it sometimes takes me a while to return those e-mails or to follow-up on the comments left on my posts, but do know that I read each and every one, and try my best to keep current with my correspondence. Unfortunately, the realities of having MS sometimes conspire to keep me less productive than I'd like to be.

While I am extremely proud to have won the medGadget award, the blog that took second place,"Brass and Ivory" (click here), and the person who writes it, Lisa Emrich, are equally deserving of accolades. Lisa is a fellow MS patient who has long championed the cause of MS patient activism, and has been a driving force in creating a cohesive community of Multiple Sclerosis bloggers. While I believe it speaks to the quality of both blogs, in a way it's unfortunate that two MS blogs were nominated for the award, for as a patient population, we need to speak in one voice, demanding something far better than the status quo when it comes to the research and treatment of MS. Blogs like Wheelchair Kamikaze and Brass and Ivory should not be perceived as being in competition with one another, but as complementing each other in the mutual fight against MS and an MS establishment that at times appears far too willing to settle for a paradigm in which treatment is good enough.

The clout of the Internet has forced some fundamental changes upon the doctor-patient relationship, as technology has allowed patients access to information that had, until recently, been held strictly in the province of medical professionals. A multitude of blogs and forums have allowed MS patients to educate themselves and each other, to share experiences and opinions that have enabled the MS population to become a powerful force for the advocacy of new and better treatment options, and to intelligently participate in treatment choices that had in the past been made for them.

As the controversy surrounding CCSVI illustrates, the voice of patients can no longer be ignored. When the MS establishment tried to dismiss CCSVI outright, a virtual patient revolt made that same establishment not only take notice but take action, in the form of serious scientific trials designed to investigate Dr. Zamboni's theory. Although these trials might not be to the exact specifications that patients desired, valuable information will be gleaned from them. Furthermore, the force of patient momentum has set into motion events that have led to increasing treatment options and the interest of scientists worldwide. We will get our answers soon enough.

At the very least, patient outcry has forced medicine to look beyond the autoimmune theory and the hideously expensive drugs designed to address it (and, more to the point, to reap tremendous profit for those who manufacture them), and to, perhaps for the first time in decades, scrutinize Multiple Sclerosis with fresh eyes. While the current crop of drugs can improve the quality of life for a portion of the MS population, they do nothing to address the underlying cause of the disease, and it should now be clear to MS researchers and physicians that this is simply not sufficient.

As patients, we must demand that research into the true cause of the disease, research that could eventually lead to a cure, be undertaken with all haste and vigor, corporate profits be damned. We are thankful for the imperfect relief that medical science has thus far brought to some of our MS brothers and sisters, but relief falls far short of the goal. In one voice, MS patients must stand up and shout, "Enough! Treatment is not an endpoint; we will accept nothing short of a cure!"

And when that cure is finally found, MS blogs, forums, and patients alike will be able to hail the greatest victory of all, a victory in which we all will have proudly participated.

Diversions

Image by al_dekleine via Flickr

I've found that Multiple Sclerosis can become an all-consuming obsession to those suffering from it. Or, to be more precise, to this person suffering from it. Between coping with the marching progression of the disease itself, keeping up with doctor’s appointments and phone consultations, dealing with insurance companies and disability issues, searching for and reading the latest and greatest in MS research news, and tracking the ever-growing conflict being waged over CCSVI, MS can commandeer not only your body and your mind, but your time as well. I'm always preaching about not letting MS define you, and I thought I'd made a pretty good effort at avoiding that trap, but it occurs to me that the pile of unanswered e-mails, the growing number of phone calls that need to be returned, the stack of books and magazines I'm always just about to get to, and the dozens of unwatched shows on my DVR (almost all about archaeology, World War II, mythical creatures, UFOs, or quantum physics) would loudly argue otherwise.

Sometimes it's imperative to just tear yourself away from the addictive gravity of the MS universe, and lose yourself in something else. Family, friends, and loved ones are always a nice distraction (I'm making a crass understatement here), and the football Giants and baseball Red Sox deserve rapt attention. I also have one other passion that I can get entirely immersed in, and it's something that Multiple Sclerosis stole from me, but then, completely unexpectedly, gave back.

Before getting sick, I spent a lot of time on photography. I caught the photo bug early in my teenage years, and then later got a degree in Film. That degree led to a career in television and video production, and when I started out in "the biz" I could very often be found with my eye pressed hard against the viewfinder of a pro video camera, shooting all kinds of cool stuff. I wound up taking video from a sensational variety of flying machines, including hot-air balloons, the Goodyear blimp (three times!), police helicopters, tiny airplanes, and even once from a vintage World War II B-17 bomber. I shot minor-league baseball games and alligators in the Everglades. As my career advanced, I moved from cameraman to video editor to producer, playing with and manipulating images all along the way. Eventually, though, I wound up being a boss, and by necessity dealt more with clients and the good people working in my department than with the images themselves.

To make up for the lack of picture taking and making in my professional life, I went back to snapping away in my private life. This was right around the time when digital photography started to really take hold, and, unlike when I was a kid, when cameras used film, which meant relying on photo processors and darkrooms, suddenly you could do everything photographic all by yourself. The magic of Photoshop puts an entire darkroom in your computer, right at your fingertips. The camera became my constant companion, and all of those years spent looking at and working with images professionally left me with a pretty good eye. I won a few online photo contests, and happily became an active amateur photographer. I've always been drawn to the past, and even in the digital age I found myself becoming fascinated with antique cameras that use good old fashioned film, and with cheap plastic toy cameras that make images that feel like they were snatched from a dream.

Here are a few photos I took back in my healthy days. The square ones were taken with toy and/or vintage cameras. Click each thumbnail for a larger image:

And then I got sick. A slight limp in my right leg soon evolved into weakness in my entire right side, which is quite inconvenient for a right-handed person. To my utter dismay, within only a few years I could no longer hold a camera to my eye, or push a shutter button. MS had stolen photography from me, and in the early years of my disease this was just about the greatest loss the disease meted out. I could still work, could still walk (with increasing difficulty), and, with adjustments, could still live a semblance of my old life. I even learned how to use chopsticks left-handed. But, although I tried, taking photos soon proved to be impossible. Attempting to operate the controls of a camera while framing a shot one-handed was extremely difficult, especially since that one hand was very often frantically reaching for something to grab, and eventually was needed to hold a cane.

Thanks to the aggressiveness of my disease, a shiny new set of wheels soon became part of my life. Not the Porsche roadster I'd always dreamed of, but a Quantum Q6000Z power wheelchair. After some initial trepidation, I became quite fond of the electric beast, which suddenly expanded the size of my world from my 850 ft.² apartment to the 20 or so miles the chair will go until the batteries give out. I know it's almost verboten to say, but I actually found driving the thing to be, well, fun. I could zoom past pedestrians on city streets, explore the many nooks and crannies of Central Park, and cruise along the trail next to the Hudson. Pretty good, and a big improvement over the pathetic few painful steps I had been reduced to.

My wife Karen soon started suggesting that I figure out a way to rig a camera up to the chair, so that I could start taking pictures again. Being grumpy and contrarian, I always muttered one excuse or another about why such a scheme would never work. I think I was afraid that even if I could figure out how to secure a camera to the chair, the results would suck, and that would make me feel worse than not ever having tried, proving that despite my best efforts I was somehow diminished. Still, Karen kept up the pressure, and I finally gave her the go-ahead to get me the required equipment for Christmas (click here to see set up). After a few test runs, I started noticing that the results weren't all that bad. They were somehow different than my old shots, which were more off-the-cuff and improvisational, but shooting from the chair required me to work within a set of some pretty stringent restrictions, and doing so forced some creative discipline on me.

Almost inevitably, I think the MS experience also changed the nature of my shots. Certainly not in any conscious way, but I now seem to take photos of that are a little bit more contemplative, and some have a kind of turbulent tranquility to them. More thought is put into each shot, an attempt to inject some beauty into a scarred existence.

Though I got very sick this past September, and was out of action until the beginning of November, I did manage to get to Central Park a few times later in the month to capture some autumn scenes. Here are a few of them, along with a couple that I shot this summer (including one of Karen, who gets full blame for this madness). Hope you like them, I'll be adding some of them to the Wheelchair Kamikaze photo gallery on the left side of the page. Click thumbnail for a larger image:

Seeing Red

Image via Wikipedia

I'm generally a guy who is very slow to anger. I'm relatively even-tempered, and always try to remind myself that triumph and disaster, as Rudyard Kipling said, are both impostors. The heights of triumph and the valleys of disaster are usually short-lived, and to allow either to trick you into believing that yours is a life that will always be lived in splendor or despair is to have a deluded grasp on reality. I once won over $14,000 in the Florida lottery, and I've seen many of my chosen horses fall short by a nose, both literally and metaphorically. It isn't that I haven't allowed myself to experience the sweetness of conquest, or the bitterness of downfall, but I've long tried to keep things in perspective.

Though I was wildly emotional in my youth, with age has come at least a smidgen of wisdom, and I've learned that a dash of Zen detachment can go quite a long way towards keeping yourself sane and your life on a relatively steady course. Being diagnosed with MS has certainly put my studied grasp on my own emotions to the test, but practiced discipline has helped me to make the many mindbending decisions that are thrust upon patients with chronically debilitating diseases.

Still, there is much about having MS that just plain pisses me off. And not just the fact that I have the disease, which all by itself is a real kick in the ass. But there is a veritable potpourri of reasons to be angry that come parceled with the disease, some of which become apparent only after the blinding smoke from the explosive burst of the initial diagnosis clears, and you get down to the business of day-to-day life with your new and unwanted companion.

Let me start with a favorite target of most MS patients, and one that often seems to go out of its way to earn the bile of those it's supposed to be helping: the medical research establishment in general, and more specifically, the entities that fuel and profit from this woefully dysfunctional beast, the big pharmaceutical companies. To cut directly to the chase, why the hell is so much time and money being spent developing drugs and compounds that do nothing to address the still mysterious cause of MS, but in reality only treat what is essentially a symptom of the disease, a broken immune system. Can we throw a few dollars at finding the cause of this freaking monster? The hideously expensive solutions presented to MS patients don't even have the decency to try to pretend that they're fixing the abnormal immune response that is most likely not the primary culprit behind our creeping paralysis. No, the "Disease Modifying Drugs" modulate naughty immune cells, or suppress them, like a perturbed parent swatting a misbehaving child on the backside and then sending them to stand in the corner.

For the privilege of taking these drugs, the best of which only work in about 65% of those using them, MS patients must overlook the long list of side effects that go with them, starting at the benign end with flulike symptoms, and ending more ominously with the possibility of terrifying brain infections and deadly cancers. Yes, these drugs can improve the quality of life of the percentage of patients they do happen to work on, but that's about as good as it gets. They do absolutely nothing, squat, zippo, to actually cure anything. Instead, they turn the patients into pharmaceutical company clients for life, even if those lives may be shortened by the above-mentioned side effects. What these drugs have been spectacularly successful at doing is enriching the pharmaceutical companies that make them, to the tune of billions of dollars a year. Why cure, when you can treat, and mint money at the same time?

When it comes to medical research, our society has its collective head up its ass. We have extensively trained and credentialed brilliant minds working on cures for baldness and erectile dysfunction while cancer patients are dying, MS patients are becoming crippled, Parkinson's patients are losing control of their bodies, diabetics are going blind and losing limbs, and Alzheimer's patients are watching the very essence of who they are slip away. Granted, being chrome domed and limp schlonged may indeed be upsetting, but sorry, Buster, get to the back of the line. Oh, but wait, I keep forgetting that making money is the goal here, and aging men will go deep into hock for a head full of wavy hair and a phallus that will spring to life at the drop of a pill. Let us not forget, there's also the little fact that most of the occupants of the executive offices of the companies funding our medical research machine can count themselves among the chrome domed and limp schlonged. At least we with serious illnesses can rest assured, secure in the knowledge that those in power have their priorities straight. Making money? Check! Growing hair? Check! Stiffening schlongs? Check! Curing horrible illnesses? Well, that one will have to wait ...

I'm also getting increasingly pissed off at MS neurologists these days. I remain convinced that almost all of them genuinely have the best interests of their patients at heart. They're almost unique in the world of medicine as doctors who have never once cured any of their patients. I've been lucky enough to have met and been treated (unsuccessfully) by some of the best in the business, many of whom are quite literally obsessed with finding some way, any way, to find relief for their patients, but nevertheless they somehow can't stop themselves from denigrating the new kid on the block, CCSVI, and actively stand in the way of research that could confirm or disprove this new vascular theory of MS.

Fine, neurologists have reasons to seriously doubt the validity of the hypothesis, some of which even make sense. There certainly are aspects of the CCSVI hypothesis that contradict known MS Pathology. All the more reason, I should think, for the neurologic community to get fully behind CCSVI research. It seems to me that the quickest way to disprove a theory that they're so sure is completely wrong would be to eagerly team up with vascular physicians to design and put into motion quick and effective trials of CCSVI, thereby settling the question once and for all. By obstinately objecting to such trials, neurologists are not only forcing their desperate patients to seek treatment behind their backs, but they're actually perpetuating the life of a treatment modality that they say has no possible chance of having anything to do with Multiple Sclerosis. No chance? Really? Then prove it.

There are scads of willing MS patients and waiting Interventional Radiologists ready to start large-scale treatment trials that would put all questions to bed. If the trials prove that CCSVI is a crock, the neurologists can pat themselves on the back and do a touchdown dance. If, though, trials prove that CCSVI at least plays some part in the MS disease process and treating it can help patients, then they could also do their touchdown dance, because they'd finally have a radical new way to relieve the suffering of those they treat. Believe me, even should CCSVI prove to be THE cause of MS, there will be plenty of us with nervous systems damaged beyond the ability of CCSVI to help to keep neurologists in business for a long, long time.

I've talked to many of the pioneering CCSVI doctors, and almost every one tells me that they've reached out to the neurologic community to find willing partners, only to be rebuffed at every turn. Hey, neurologists, it's time to put on your big boy pants and step up to the plate. Your patients are demanding it.

As my disease has progressed, and I have become increasingly disabled, I've been handed yet more reasons to be angry. Unlike many other wheelchair users, I haven't encountered too many people who have been discourteous or rude, but here the streets are plagued with zombiefied pedestrians completely consumed with their smart phones and PDAs, to the point where they actually walk right into me and my wheelchair.

Now, this is New York City, and most pedestrians aren't going for arduous, time-consuming, miles long hikes. If they're traveling any significant distance at all, they're very likely either getting into a cab, bus, or subway. Those walking the streets are usually going for quick jaunts of no more than 20 minutes, during which time it seems that it's impossible for them to not stay constantly connected to somebody someplace. What on earth could be so important that they can't actually watch where they're going, join the rest of the world for a few minutes, and wait until they've reached their destinations to reconnect? Instead they are compelled to keep talking and texting while blindly placing one foot in front of the other, oblivious to everything around them. I wonder, do they text, "I JUST WALKED INTO A GUY IN A WHEELCHAIR?" If this doesn't stop soon, some of them are going to need to dial 911 and text, "OMG! SOME LUNATIC IN A WHEELCHAIR JUST SHATTERED BOTH OF MY SHIN BONES."

I'm also peeved at all the shops and restaurants in the city that would be wheelchair accessible if not for the single 1 foot step they have in front of their entryways. Can they not replace these little steps with little ramps, so that I could spend some time and money in their establishments? It wouldn't cost much, and my money is just as green as that of the guy with fully functional legs who just walked into me.

So, what to do with all this anger, bitterness, and resentment that can arise not only from Multiple Sclerosis itself but from the frustrations that go along with it? Well, you can let your anger just sit and fester, like the flesh of a pedestrian stuck to the chassis of my wheelchair, or you can turn it into the energy that it takes to fight this damned disease each and every day. Way back when I was a teenager, The Clash sang, "Let fury have the hour, Anger can be power, You know that you can use it." And use it you can, to educate yourself and become your own best advocate, to power the resolve that this disease will not define you, and to not ever give way to despair. Anger is an energy, and turned inward anger can only do damage to those feeling it, but channeled outward and targeted correctly, anger can be the motivation to annoy the bejeezus out of some people who could really use some annoying…