Study: 100% of MS Patients Are Infected with Epstein-Barr Virus

A recently published study found that 100% of its subjects suffering from Multiple Sclerosis were infected with the Epstein-Barr virus. While Epstein-Barr infection is extremely prevalent in the general population (with infection rates upwards of 90%), it is striking that virtually every MS patient looked at carried the virus.

Of course, this does not prove that EBV alone causes Multiple Sclerosis. Since most of the adult population is infected with EBV, and only a very small percentage of those infected develop MS, the virus alone cannot be the sole cause of the disease. More likely, a combination of genetic predisposition, Epstein-Barr infection, and some other trigger, such as vitamin D deficiency, sets off the anomalous immune reaction that is called Multiple Sclerosis.

As a leading epidemiologist said, the study does show that "people who are not infected with EBV do not get MS". The study also found that subjects without MS who had the highest levels of EBV antibodies were at the highest risk of developing MS at some later time.

This topic has come up from time to time on many of the Internet MS forums, and some patients always strongly object, stating that they couldn't be infected with Epstein-Barr virus, because they've never had mono. The fact is that most people who carry EBV are completely unaware that they are infected with the virus. EBV infections can be asymptomatic, or may be mistaken for a cold or flu. Using myself as an example, I have tested positive for EBV, but have never had mononucleosis.

My neurologist, Dr. Big Brain, told me several years ago that every MS patient is infected with EBV. He was right. That’s why I call him Dr. Big Brain.

The Breath of the Dragon...

Multiple Sclerosis is a thief. It is indiscriminate in its larceny, robbing its victims of both the profound and the trivial. The disease has stolen from me elements that were once the very foundations of my life (my career, a large part of my social life, the expectation that I would one day learn to juggle), and things that by comparison might seem somewhat slight, like the ability to type.

Since my right hand now has about as much strength and dexterity as a latke, typing has become a strictly one-handed affair. I was never that great a typist to begin with, as I was thrown out of my seventh grade typing class after refusing to stop singing "Hey, Hey, We're the Monkees" during class exercises. The instructor just didn't see the wit in my crooning reference to the old adage that if 1000 monkeys typed for 1000 years, one of them would eventually write "Hamlet". So, I was banished from the classroom, and instead of Typing, was given study hall, which allowed me to take a nice little nap in the middle of the day, but did nothing for my ability to use a keyboard.

When MS robbed me of the use of my right hand, it made typing, which had always been an arduous two fingered affair anyway, into a one fingered nightmare. My ability to communicate via the QWERTY keyboard was virtually eliminated, a major handicap in this day of Internet bulletin boards, e-mail, and instant messaging. How then, the astute reader may ask, am I able to compose the drivel that I post to this blog?

The answer comes in the form of an amazing piece of technology, a voice recognition software program called Dragon NaturallySpeaking. This wonder allows me to simply speak my thoughts, and see them magically transcribed onto my computer screen. It's like something out of Harry Potter, but without all of the crazy protesters claiming that it promotes Satan.

Without Dragon, I would have been rendered mute to the world of the Internet, and instead would have been left only to rant at Melvin, the giant Kleenex who is my invisible friend. The program has relieved me entirely of the need to type, and if I were to wake up 100% healthy tomorrow, I'd continue using it.

Admittedly, the software isn't perfect. It is usually remarkably accurate, but it does require the user to enunciate clearly, and to speak in a constant rhythm. For a native New Yorker, whose mumbles are often incoherent to anyone who resides outside of The Big Apple, this requirement is something of a challenge. Still, Dragon NaturallySpeaking manages to understand the vast majority of my utterances. It actually learns a user's speech patterns, and gets more accurate the more it is used. The mistakes it does make are easily corrected, with intuitive commands that allow for the quick editing and replacing of any misrecognized words.

To demonstrate its accuracy, I'll dictate some familiar passages, and leave them unedited. Here goes:

Mary had a Little Lamb, its fleece was white as snow, and everywhere that Mary went, the lamb was sure to go.

Okay, Dragon did well with that one, except for capitalizing little lamb. I don't have any idea why it did that. Let's try another example:

I pledge allegiance to the flag of the United States of America, and to the republic for which it stands, one nation, under God, indivisible, with liberty and justice for all.

Perfect. No mistakes at all. Okay, one more example, I'll try to make this one a little more difficult. Here's the famous soliloquy from "Hamlet" (my old typing teacher be damned):

To be were not to be, that is the question; whether it is nobler in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles, and by opposing, end them. To die, to sleep, no more; and by a sleep to say we end the heartache and the thousand natural shocks that flesh is heir to. It is a consummation devoutly to be wished.

Okay, a few little mistakes, but really quite good. It garbled the first line, but that could've been the fault of my pronunciation. Incredibly, it got "heir" right. I was expecting it to transcribe "air". The program also replaced "‘tis" with "it is", but that's understandable.’Tis is not used very much this century.

So, there you have it. If, like me, MS or some other malady has affected your ability to type, or even if you just hate typing, you might want to consider Dragon NaturallySpeaking. The program also allows you to use voice commands to navigate software and your computer desktop, but so far I haven't really used those functions too much.

If you do decide to give the Dragon a try, I'd recommend you pick up a quality microphone, as the headset included in the program is pure crap. I'm currently using a Logitech desktop microphone. I previously used an expensive high-quality headset microphone, but the Logitech is much cheaper and seems to work equally well.

Using Dragon NaturallySpeaking doesn't make MS suck any less, but it does allow me to write about how much having MS sucks.

Gotta go, Melvin wants to play Parcheesi (BTW, Dragon got "Parcheesi" right)...

Is MS Actually A Vascular Disease?

A group of researchers in Italy is proposing a revolutionary new theory about Multiple Sclerosis. They’ve offered some compelling evidence that MS is primarily a vascular disease, and that the neurologic damage seen in MS patients has its genesis in blood flow problems within the veins of those patients. They're calling this theory Chronic Cerebrospinal Venous Insufficiency, or CCSVI for short.

The Italian researchers, led by Dr. Paolo Zamboni, imaged the veins leading from the brain and spinal cord of several hundred MS patients, and found that virtually all of them showed evidence of a narrowing or blockage of these vital vascular pathways. Specifically, they found blockages or stenosis in the jugular and/or azygos veins of the MS patients they studied, findings not seen in healthy control subjects or in patients with other vascular or neurolgic conditions.

These researchers theorize that these blockages constrict the flow of blood leaving the central nervous system, causing a reflux of blood back into the brain and/or spine. This reflux leads to edema and inflammation, which in turn leads to an immune response, which then leads to the lesions that are the hallmark of Multiple Sclerosis.

A group of patients who congregate online at ThisisMS.com have become convinced that there is significant merit to this theory. Here is a link to a thread on that site which contains all of the research behind the CCSVI theory, and discussions pertinent to it. One of these patients managed to contact a highly respected vascular doctor at Stanford University, Dr. Michael Dake,. who looked over the research materials and agreed that there might indeed be something to this radical approach.

Dr. Dake and his colleagues have themselves begun imaging the vascular systems of MS patients, and have found results similar to those of the Italian researchers. The Stanford group has gone so far as to start surgically clearing the blocked veins of MS patients, by placing stents at the sites of the blockages.

The researchers in Italy have also been clearing the blockages that they've found, and plan on holding a news conference announcing their findings and results sometime early this summer.

Needless to say, this theory, and the data behind it, flies in the face of accepted scientific thought about Multiple Sclerosis. I'm not entirely convinced that this hypothesis explains all the complexities and wide range of disease presentations seen in MS patients, but the evidence certainly seems compelling enough to warrant further serious investigation.

Personally, I've never quite bought into the "autoimmune" theory of the disease, and I would welcome the paradigm shift that these new ideas might bring about. It's time for mainstream researchers to start looking beyond accepted MS dogma, which thus far has brought us treatments that are only partially effective, and often highly toxic. Surely, there must be a better approach to treating MS than suppressing the intricately complex human immune system.

There is precedent to this kind of radical shift in ideas about a disease. For decades, gastric ulcers with thought to be caused by diet and stress, until researchers discovered that they are actually caused by a bacteria that can be treated quite successfully with antibiotics. Poking at theories that have been accepted as fact can sometimes lead to startling results.

New! Update on "MS as Vascular Disease", posted 8/28/09.

Update 11/21/09! Canadian television has done a video news report on CCSVI. Click here for the link.

Update 11/30/09! CCSVI: Separating Fact from Fiction. Click here.

That Was Then, This Is Ow...

Ouch.

I say that word more than any 45-year-old man should. I'm also far too often exclaiming ow, youch, yowie, yikes, and an almost infinite number of variations on the theme.

Why, you may ask, am I constantly uttering such guttural expressions of pain? Am I into some kinky alternative lifestyle? After all, MS is not generally a painful condition. Yes, some MS people are plagued with neuropathic pain, but, alas, I'm not one of them.

Instead, I was lucky enough hit the drug side effect jackpot. I developed a condition called Avascular Necrosis from a 10 day course of IV steroids that was given to me in an attempt to slow down my quickly progressing MS. The steroids worked, at least temporarily, and my MS symptoms were knocked back for a time. I recovered some function that had been lost for months.

Unfortunately, about six months later, I started feeling some nagging pain in my left hip and right shoulder. At first I just ignored it, since it seemed insignificant compared to the encroaching weakness and spasticity courtesy of my MS (or whatever it is). But as the pain lingered and began to worsen, I mentioned it to my neuro, who ordered MRIs of my problematic joints. A week later, the doctor called to inform me that I had developed Avascular Necrosis, a progressive disease of the joints that is a rare side effect of intravenous steroids.

Wow. I was floored. I didn’t see that one coming. I kind of felt that I was immune from other horrible diseases once I had been hit with MS. Wasn't there some universal statute of limitations that governed the amount of suck ass conditions one person could be afflicted with?

No, it turns out, there isn't.

Avascular Necrosis is a condition in which the bones in a patient's joints, most often the shoulders and hips, actually start dying. No one is quite sure why this happens, but it's thought that, in rare cases, steroids can permanently cut off the blood supply to these bones, thereby causing them to give up the ghost. Steroids are not the only cause of Avascular Necrosis, though. It can also be caused by chronic alcoholism, injury, and sometimes it manifests for no apparent reason at all. Whatever its cause, AVN is the leading cause of hip replacement in the United States.

As the condition progresses, the dead and dying bones begin to crumble, causing pain that can be quite intense, especially when weight is placed on the affected joints. I've got AVN in both hips and both shoulders. The shoulders aren't too much of a bother, but the hips are a real problem. At this stage of the game, both of my femoral heads have collapsed, and it often feels as if my hip bones have been replaced with red hot razor blades and shards of glass. It's also something of a mind frack to think that I've got dead bones in my body. Ick.

In an otherwise healthy patient, the piss poor state of my hips would have long ago required total hip replacements, but because of the ravages of my neurologic condition, I wouldn't be able to properly rehab from the surgery, so I'm pretty much left to just deal with the "discomfort"of having a jumble of crumbled, dead bone where my hips should be. I've been given powerful anti-inflammatories, and a supply of narcotic painkillers, but neither really do the trick.

The anti-inflammatories (Voltaren) worked at first, but their effects have diminished with time. The painkillers (Percocet) just make me feel dopey, and as my friends and family would quickly attest, I'm dopey enough without them, thank you. It's funny, back in my wild and crazy youth, Percocet one of my favorite recreational "enhancements", but now that I actually need it, I can't stand the effect it has on me. Go figure...

Oddly, the one thing that does ease the pain is occasional shots of cortisone, which is a steroid. It's kind of like taking the hair of the dog that bit you. Steroids cause Avascular Necrosis, and steroids are apparently the only thing that can temporarily relieve the pain of the condition. Unfortunately, cortisone can't be used too often, for fear of worsening the AVN. Damned if you do, damned if you don't...

The combination of weakness, spasticity, and intense pain has made my walking around the apartment quite a noisy affair. It sounds something like this: shuffle (me dragging my right leg), clunk (the sound of my cane on the floor), ouch (me, as the AVN takes a bite out of my hips). Shuffle, clunk, yowie. Shuffle, clunk, youch. Shuffle, clunk, son of a bitch. Shuffle, clunk, holy crap. Shuffle, clunk, mother &%@%!!!. After about five steps, I'm transformed into a one-man parade of shouted profanity.

The Marquis de Sade would be thrilled. Miss Manners, not so much...

Zen, Poker, and Multiple Sclerosis

Back in my healthy days, I found myself drawn to the teachings of Zen. My life was frequently turbulent, and I often felt like the target in a game of "whack a mole". The clarity and serenity that Zen offered seemed quite appealing. I read books on Zen thought, talked to practicing Buddhists, and came to have a pretty good working knowledge of philosophies that are the foundation of Zen practice.

Intellectually, I understood the importance of living in the moment, and could see how vanity and attachment to desire breed misery. In an abstract way, it made sense to me that there are no absolute realities, only those we create by filtering the world through our emotions and opinions. Since, with practice and effort, we can control those emotions and opinions, we should also be able to control our realities, and master our reactions to changing circumstances.

Emotionally, though, it was a different story. Rather than controlling my emotions, my emotions controlled me. I wore my psychic wounds as badges of honor, like a Boy Scout who had just learned how to tie a box knot. Unfortunately, the only thing I’d learned to tie in knots was myself, and, simmering somewhere in the background, I expected some reward for all of the angst that I embraced. I paid Zen lip service, but never truly incorporated its teachings into my daily routine.

And then I was diagnosed with MS. Suddenly I was faced with trouble of an entirely different magnitude. Not with existential angst, not with romantic heartbreak, not with the pain of being human, but with an all too real disease that was literally eating holes in my brain and spinal cord. All of my other worries suddenly seemed quite trivial.

I desperately wanted a do-over. Hey, Universe, I'll trade you my shiny new spinal lesion for a nice dollop of existential angst, what do you say? What? No deal? How about a hole in my brain for a smidgen of heartbreak? Again no? Who are you, that supermodel I once asked out? I demand to speak to your supervisor! Hey, wait a minute... Hello? Hello? How dare you hang up on me! Waiter! There's a fly in my soup! And a hole in my brain! Holy crap!...

Thankfully, the universe had provided me with the one thing I absolutely needed to get through this experience, a kind, gentle, caring wife who has stood beside me through it all...

After the initial shock of the diagnosis started to wear off, I found myself turning to my knowledge of Zen as a matter of survival. MS has turned all of those Zen abstractions into hard realities. Living in the moment? The disease forces you to live in the moment. My healthy past is gone forever, and the progressive nature of MS makes peering into the future quite unsettling... Attachment to desires? Most of what I desired went right into the crapper. Career? Kaput. Wealth? Have you ever seen the dollar figures on a disability check?... Vanity? Finding your spastic ass stuck in a wheelchair will quickly cure you of vanity. Zen values humility. MS supplies plenty of it...

I've played a lot of poker in my time, and I've found that the game can teach lessons that resonate far beyond the poker table. Poker and Zen have much in common; both teach the power of making proper choices, and the importance of practicing emotional control despite ever-changing circumstances.

The law of averages tells us that if a group of poker players play enough hands, they will all eventually be dealt the same proportion of good and bad cards. Logic, then, would dictate that these poker players should all eventually break even, since they'd have all played a similar mix of cards. Of course, this not how things actually work. In the real world, there are players who consistently win, and players who consistently lose. The difference between them is not the hands they are dealt, but how they play them. Winning poker players know that they themselves determine whether they'll be winners or losers. The cards are actually secondary.

Likewise, over the course of a lifetime, we are all dealt a wide variety of circumstances. If happiness and contentment are the "chips" we try to accumulate, those who triumph understand that what determines their own happiness is not the circumstances life hands them, but how they deal with those circumstances. Happiness is not a choice; it's a million choices, made every day. If you choose to label a situation, such as getting MS, as a calamity, or a tragedy, then it will surely be one. On the other hand, if that same situation is reacted to with a mix of wisdom, resolve, and kindness to self, it needn't be an emotional wrecking ball. Certainly, getting such a diagnosis dramatically changes the course of your life. The key then, is to let go of your old road map, and to learn how to best navigate the path you now must follow.

MS is no blessing, but it doesn't have to be a curse, either. It just is, something that happened during a lifetime of somethings that happened . Though I might not have control over what the disease does to me physically, it is within my grasp to control its emotional impact . It's all in how I choose to play the hand that's been dealt.

As Paul Newman said in "Cool Hand Luke", "Sometimes nothing is a real cool hand..."

Will The FDA Kill Adult Stem Cell Medicine?

I usually try to take a humorous approach to the serious issues involved with dealing with chronic illnesses such as multiple sclerosis. This issue is so serious, though, that I'm not finding much funny about it.

A recent news article raises some questions that are of utmost importance to any patient dealing with serious/chronic illness. Although the article is more an opinion piece then straight up journalism, the issues it talks about are vitally important.

In a nutshell, the piece is concerned with the fact that the FDA is currently in the process of deciding whether to classify adult stem cells as prescription medicines, which would thereby give the FDA the right to regulate the way such medicine will be administered. Please keep in mind, we're not talking about embryonic stem cells here, so there are no moral politics involved in this matter. At issue is adult stem cell therapy, which comes with none of the complicated moral questions surrounding embryonic cells. Instead, it's money, scads and scads of dollars, that are at the heart of the issue.

The drug companies (Big Pharma) are lobbying hard to get the FDA to declare stem cells "prescription drugs", thereby giving the drug companies considerable control over this revolutionary medical technology. Stem cells hold the promise of completely changing the face of modern medicine. They are the key to unlocking the human body's own ability to heal and regenerate itself. Stem cells could make the way medicine is currently practiced, with all of its invasive surgeries and use of potentially toxic pharmaceuticals, as obsolete as the medical practices of the 1700s are today.

This all presents a great threat to the pharmaceutical industry. Over the last 50 years, the marketing of pharmaceuticals has become an industry that generates hundreds of billions of dollars each year. Much of this money is generated by drugs used to treat "chronic" illnesses, such as diabetes and multiple sclerosis. Diseases such as these are cash cows for the industry, because patients stricken with them are forced to be consumers of the industry's products for life. Medicine is well on the way to transforming previously fatal diseases, such as some forms of cancer and AIDS, into chronic illnesses, creating yet more lifelong consumers of expensive pharmaceutical therapies.

The success of stem cells would mean that many of the medicines used to treat chronic illnesses would be rendered instantly obsolete. Big Pharma stands to lose billions and billions of dollars if the promise of stem cells turns out to be even only partially fulfilled.

It's important to remember that all of the companies that make up "Big Pharma" are public companies, and as such are by law beholden to their stockholders, not to the patients that take their products. Their primary mandate as public companies is not to benefit mankind through the creation of medical miracles, but to earn ever increasing amounts of money.

While on the face of it this would seem to be all well and good, as the best way for pharmaceutical companies to make money is to create effective drugs, there is actually a basic conflict to this equation. Turning potentially fatal or disabling diseases into manageable chronic illnesses generates huge amounts of wealth, but curing those same illnesses puts an end to the cash flow. Thus, we see great amounts of effort and capital going into researching drugs that treat illnesses, but not much going into research that might actually cure them.

I'm not suggesting that there is some evil conspiracy afoot, or that there is a cabal of miserly old men sitting in an opulent conference room somewhere, casually devouring infants as they plot to make untold billions of dollars by ensuring that illnesses are never cured. If that were the case, the solution would be easy, simply eradicate that opulent conference room and the baby eaters in it, and proceed on to the cures. Instead, the problem is much more insidious.

Over 70% of medical research in the United States is funded by the pharmaceutical companies. As stated before, the primary mandate of these companies is to make money, which they do best by discovering "blockbuster" drugs that will generate billions of dollars. Therefore, pharmaceutical research money is funneled towards projects that hold the promise of just such discoveries.

Research scientists, as well-meaning as they might be, still must rely on grants from pharmaceutical companies to fund their research (and therefore pay their rent, feed their families, and advance their careers), and thus are naturally inclined to conduct research that will attract pharmaceutical company dollars. In a way, it's a vicious cycle; pharmaceutical companies tend to fund only those projects which they think have the biggest profit potential, thereby influencing researchers and scientists, who, after all, need to make a living, to embark upon research that is likely to have the profit-making potential that the drug companies are looking for.

Stem cells threaten to throw this whole system on its ear. The process of extracting stem cells from a patient (usually from bone marrow or fat tissue) can be done in a doctor's office, and the processing of such cells can take place in laboratories outside the purview of the pharmaceutical companies. These procedures are not so complicated that the industrial might of the pharmaceutical industry is needed to make them a reality. They are more on the scale of fertility treatments, which are administered in local clinics by local doctors without the "help" of Big Pharma.

If the pharmaceutical industry is successful in its lobbying efforts to get the FDA to declare stem cells "prescription drugs", the power of stem cells will be ripped from the hands of physicians and placed in the hands of public companies whose profit-making mandate could actually lead to the suppression of potentially revolutionary stem cell therapies. This would have tragic consequences for the millions of patients that could potentially benefit from stem cell treatments.

Laboratory models and animal testing have shown that these treatments are extremely viable, and many could likely be ready to treat human patients within the next five years, if left in the hands of physicians and researchers. If, instead, stem cells are declared "prescription drugs", these therapies might not see the light of day for decades.

If you or a loved one suffers from a chronic illness, it is time for your voice to be heard. Call your senators, call your congressman, write letters to your newspapers. Demand that your friends and family do the same. Climb up on soapboxes and scream from mountaintops. Bang drums, put on face paint, and go on the warpath. Treat this issue as if your very life depends on it, because it does...

New Video! Sunday in the Park with a Kamikaze...

Hey, folks, here's my latest Wheelchair Kamikaze video. It's a kamikaze's eye view of an afternoon in Central Park, one of the best places in the world. I hope everybody has as much fun watching it as I had making it...

The Kamikaze Camera Set Up

Several people have asked about my wheelchair and camera rig, so here is all the pertinent info.

My wheelchair is a Quantum Rehab Q6000Z, made by Pride Mobility. As you can tell from the videos, the chair is quite rugged, and I have the "high-speed package" installed, which brings the top speed to 8.5 mph, up from the normal top speed of 6.5 mph.

The camera I'm using is a Canon SX10 IS. It's a still camera that shoots "good enough" videos. This camera allows me to take both still photographs and videos, thereby killing two birds with one stone. As you can see from the photos, below, when the camera is mounted to the wheelchair it is not at eye level, so it was important to get a camera that had a flip out viewscreen, which this Canon does.. Without this kind of a flexible screen, it would be almost impossible for me to frame shots. The camera also has an extremely long zoom range (20X), which is important because of the various restrictions that shooting from a wheelchair presents.

The camera is mounted to the chair via a Gorillapod SLR flexible tripod, on which I've mounted a Manfrotto 482 micro tripod head. The Gorillapod does not have a flexible head, meaning that the camera would be stuck in one position without the additional tripod head. The little Manfrotto head fixes that problem.

Here are some photos of the rig. Please forgive the image quality, I had to use my crappy cell phone camera to take them. Click for larger images...

It would be great if more wheelchair folks started doing some videos from their chairs. I'd be happy to post links to their work here at Wheelchair Kamikaze...

Becoming the Guy in the Wheelchair

I've recently heard from several people who are on the verge of needing wheelchairs, saying that my Wheelchair Kamikaze videos have helped them and their friends and families see that being in a wheelchair does not diminish the person sitting in it. That's a very hard and important realization to come to, and I don't mind saying that wrapping my mind around the fact that I was now "the guy in the wheelchair" was one of the most difficult adjustments I've ever had to make.

As I wrote in my previous post, the process of getting my wheelchair was a nightmarish twelve-month struggle of dealing with inept and corrupt wheelchair providers, and legions of insurance company hellions. The grand irony of the struggle was that I was fighting tooth and nail for something I was actually terrified of. Logically, and physically, it was clear that I needed a motorized power chair. Emotionally, on the other hand, it was anything but clear. Me, in a wheelchair? The thought left me feeling gutted.

In a way, the fact that I had to fight so hard to get the appropriate chair kept me from focusing too much on what getting that chair actually meant. On the day that the chair was finally delivered, I felt a momentary thrill of victory, followed by much longer moment of deep shock. So, this was my new normal. I was now the guy in the wheelchair.

I was well aware of how the healthy me usually interacted with people in wheelchairs. Or, rather, how I didn't interact with them. As my MS progressed, of course, I became more and more aware of the humanity of the individuals I saw in wheelchairs and on scooters, or struggling with walkers and other assistive devices. I knew all too well that their minds and personalities weren't broken, only their bodies, but that realization was a case of "it takes one to know one". When healthy, I think I was mostly just relieved that I wasn't one of them.

Well, now that person in the chair was me. After the wheelchair delivery guy had set up my chair and left, there I was, face to face with my new appendage. Being a boy (and make no mistake, at best I'm a mannish boy) I've always liked things with wheels and motors, and that fascination soon got the better of me. Alone in my small Manhattan apartment, I fired the damn thing up. Within seconds I had crashed into a coffee table and knocked over a wing chair. Out of sight from the rest of the world, I sat there giggling.

It's one thing, though, to zip around your apartment far from the public eye, but quite another to actually take the thing out onto the streets of Manhattan. For that momentous event, I waited for my angel of a wife to come home from work, and together we went for a spin around the neighborhood. My wife is relentlessly optimistic, and we share a keen sense of the absurd, and that first trip out in the wheelchair certainly did seem absurd, especially after I took a chunk out of the wall in front of the elevators on our floor. But we did it, and much to my surprise I wasn't the object of curiosity or derision, but was just "the guy in the wheelchair". It had been quite some time since I'd been able to go for a walk around the block, and the wheelchair was absolutely liberating. The size of my world had suddenly grown exponentially.

It took some time, but soon I found the chair to not only be physically empowering, but emotionally liberating as well. Have no illusions; people do treat you differently when you're sitting in a wheelchair. Because you are now stuck at ass level to the world, there's very little eye contact. Gone are the hundreds of little harmless flirtatious glances that passersby exchange almost reflexively. People are generally oblivious to anything going on below shoulder level, and some will actually walk right into you when you're sitting in a wheelchair. Like it or not, you are different. You're not walking around like everybody else; you are the person in the wheelchair.

But being the person in a wheelchair has its perks. If I ever tried to pull some of the stunts I do in the wheelchair while I was walking, like zipping through crowds, darting around people, and delighting in watching them scatter in front of me, I'd have gotten my ass kicked. But now, I'm the Wheelchair Kamikaze. Sorry if I startled you, but what are you going do, poke the gimp? Mind you, I'm not ever actually rude, I just like to go fast. Most people walk at about 3 mph. Well, in my chair, I can do almost three times that. It's almost like I have a superpower. Superman's got to fly, Wheelchair Kamikaze's got to go zoom...

I've also found that I'm much more likely to talk to strangers. I suppose this is a way of asserting my humanity. I'm not just a lump of flesh driving a wheelchair, I'm a human being, dammit, and a fairly entertaining one at that. Looking lost in Central Park? Here comes the Wheelchair Kamikaze to save the day. Arguing with your boyfriend over which tea to buy in the supermarket? Wheelchair Kamikaze has an opinion on tea, and he's happy to share it. I've found that once you pipe up, you often see a spark of understanding ignite in the person you're talking to. Hey, he's not just a guy in a wheelchair, he's a guy, in a wheelchair.

Damn right, and if you piss me off I'm going to run right over your tootsies.

Banzai!

You've Got To Fight For Your Right (To Be Sick)

As if battling a disease that in the old days was called "Creeping Paralysis" isn't enough, I've learned that the afflicted get the added bonus of having to fight a perpetual battle with the ungodly abominations known as insurance companies. Insurance companies rank right up there with the New York Yankees as the ultimate expressions of evil on earth. Their actions are enough to turn even the most rational person into the Unibomber.

A good friend of mine (another MS patient) was scheduled to have surgery this coming Monday, to try to fix her previously surgically "repaired" broken shoulder, which she injured in an MS related fall. The shoulder has been causing her unending misery for many months now, and my friend was hoping to finally find some relief from the constant pain. Unfortunately, that pain has now been compounded by the fiends employed by her insurance company, conniving ogres who have chosen not to authorize the surgery. Mind you, this is a surgery ordered by her orthopedic surgeon, not a cosmetic tummy tuck or facelift. They're forcing her to go through an appeals process, which won't be complete until sometime next week. So the surgery for Monday is off, hopefully to be rescheduled for the following week, if the insurance company's annointed ultimately deem the procedure worthy.

My own experience with healthcare insurance companies has been maddeningly similar. I suppose, on balance, I really shouldn't complain, as the company has paid for a myriad of expensive treatments and procedures. But I've also spent an insane amount of time on the phone with various insurance company goblins, desperately trying to convince them of the necessity of most of those procedures.

I'm generally very slow to anger, and not much of a screamer, but the insurance jackals on the other end of the line are possessed with an almost singular ability to turn me into the flesh and blood incarnation of Mount Vesuvius. I try hard to be a clear thinking individual, and strive to approach even the most emotional topics some Zen detachment, but put me on the phone with an insurance company rep and within five minutes I'm transformed into an eye bulging, mouth frothing crazy person, my senses of reason warped into the shape of a dyspeptic goat's small intestines, and my language skills diminished to the point where I can only make Tasmanian Devil noises.

It took a full year to get my wheelchair approved and finally reimbursed; a year spent screaming into the phone at the demonic entities employed by Blue Cross Blue Shield. I swear, as I talked to them I could hear their leathery wings lazily flapping in the background as they sharpened their pointy tails. When I wasn't busy trying to burst a blood vessel while holding a phone to my ear, I was scrambling to write scathing e-mails and letters documenting the fact that I was indeed partially paralyzed, and that the reason they call Progressive Multiple Sclerosis progressive is that it progresses, for God's sake. Unless they could supply me with a magic wheelchair that could fly me to Lourdes, I wasn't expecting to be going for a leisurely jog around the block any time soon.

Why they've given the name "Appeals Process" to the labyrinthine maze of bullshit they put me through is beyond me, because there's nothing appealing about it. It should more accurately be called the "Appalling Process". The situation only came to a resolution when an angelic RN, miraculously employed by the insurance company as my case manager (by mistake, I'm sure), interceded with her bean counting demonoid coworkers on my behalf. She has earned my undying gratitude and affection.

I'm a very nonviolent person, so mailing explosive devices to insurance executives is out, but I must admit to experiencing toe curling glee at the thought of a big box of ripe horse manure arriving on the desk of Blue Cross Blue Shield's Vice President of Interminable Agony...

Starting the MS Engine

Since I was first diagnosed with Multiple Sclerosis six years ago, I've probably been asked a thousand times, "What causes MS?" Seems like a pretty simple question, but the unfortunate truth is that nobody knows the root cause of Multiple Sclerosis. As with cancer, diabetes, and a host of other diseases, decades of research have allowed our best medical minds to only make educated guesses as to the genesis of the MS. Over the last 20 or so years, the prevailing hypothesis has been the "autoimmune" theory, which states that a patient's immune system for some reason goes haywire, and starts attacking their own cells. I often get the sneaking suspicion that diseases whose cause stumps our scientists are often labeled autoimmune, simply for lack of a better theory. Modern science isn't comfortable saying "I don't know", and when I see the word "autoimmune", I often put the words "I Don't Know" in its place. Multiple Sclerosis is an "I Don't Know" disease.

Through the years, I've come to look at the MS disease process as kind of resembling an automobile engine. In order to start a car engine, you must have gasoline in the tank, oil in the pan, and a key for the ignition. If one or two of these elements are missing, the car just won't start. In much the same way, MS requires a number of elements to be present for it to take hold of a patient's physiology. There is solid evidence that bacterial or viral infections play some part in the disease. Likely culprits include Epstein-Barr virus, Chlamydia Pneumonia, Varicella Zoster, and the Human Herpes Viruses. Many of these bugs infect large proportions of the population; for example, EBV is present in at least 85% of adult Americans. Obviously, only a tiny proportion of them develop MS, so EBV alone can't be the cause of the disease. There is also strong evidence that environmental toxins play a role in starting the MS disease process. Again, though, the vast majority of people exposed to common environmental toxins don't come down with MS. Therefore, there must be another component required for MS to take hold, most likely a genetic susceptibility.

It's been theorized that some people carry within their DNA remnants of ancient retroviruses that have over the eons incorporated themselves into the human genome. This retroviral DNA is normally inactive and completely benign, but perhaps the presence of a combination of infections and/or toxins can activate this DNA, and thus cause a person's immune system to see their own cells as harmful invaders.

So, to get back to the engine analogy, for a patient to get MS, they must have gas in the tank (a chronic viral or bacterial infection), oil in the pan (exposure to another environmental toxin or infectious agent), and a key to the ignition (a genetic predisposition to the disease). Without the right combination of elements present, even a person genetically susceptible to MS might never get the disease. Likewise, without genetic susceptibility, a person might be exposed to any number of MS triggers, and never develop Multiple Sclerosis. In my opinion, it's an unfortunate synchronicity of seemingly unrelated elements that turns the key that starts the MS disease engine. These elements may differ from patient to patient, and these differences in triggering elements might account for the vastly different ways that MS can present itself from case to case.

So, gentlemen (and women), start your engines. Or better yet, don't...

MS on the Internet

Having a chronic disease like MS sucks in every possible way, and I can't imagine how isolated and underinformed patients must have felt before the advent of the Internet. The World Wide Web is a vital resource for information about the disease, and is also a place to find virtual communities of people sharing the mind frakking experiences that go hand-in-hand with living with chronic illness. As sympathetic and well meaning as our healthy friends and family may be, they simply can't understand the emotional and physical toll taken by MS, and the Web provides the opportunity to reach out and "talk" to other MS patients. I've found that this has made all the difference in making daily life with MS bearable.

Here's a list of websites that I've found invaluable since I was diagnosed. I'll start with a list of websites that provide reliable information about multiple sclerosis, its treatments, MS research news, and programs designed to help MS patients.

• The Accelerated Cure Project's MS News Page-The Accelerated Cure Project is a fantastic organization dedicated to speeding up the time it takes between discoveries made in the lab and actual treatments given to patients. This page provides links to important news about multiple sclerosis, along with some commentary. The site was down for several months, but now it's back, and I'm glad.
• MS Views and News-this site provides links to all things MS, and is updated frequently. It's a great place to keep up with breaking news, and I recommend signing up for their weekly newsletter, which provides a synopsis of the significant developments in the MS world from the previous week.
• Medical News Today-this is a general medical news site, but if you register you can customize it to reflect on your particular interests. I have it set up to give me news on multiple sclerosis, and stem cells. The site also provides e-mail updates on the latest news on your chosen topics.
• The Multiple Sclerosis Resource Center-this comprehensive site maintains separate pages for MS news, MS research news, and stem cell news. Located in Great Britain, the MSRC also provides many services for British MS patients.
• The Consortium of Multiple Sclerosis Centers-this site is geared towards MS healthcare providers, but I've found it can provide valuable information for patients as well. It's also interesting to get some insight into looking at MS from the healthcare provider’s perspective.
• The National Multiple Sclerosis Society-the NMSS website is extremely deep, and provides links and info on topics ranging from MS clinical trials to MS news to MS political activism to specific NMSS patient programs. The site also has informational videos, and topics customized for patients at different disease stages.
• The Multiple Sclerosis Association of America-the MSAA offers some outstanding programs for MS patients, including a program that provides free mobility products, personal use products, and cooling garments to MS patients in financial need. In cases of insurance denials or non-insured individuals, MSAA can also assist with payment for a diagnostic MRI. The Association also provides MS life coaching services, a toll-free MS helpline, and reassurance calls. All in all, an extremely valuable resource.
• Multiple Sclerosis Society of Canada-for Canadian MS patients, this site provides viable information regarding MS, including sections on living with MS, MS treatments, and MS research. (Added info by blog reader Weeble: I might add that the Canadian MS Society page has a feature called "Ask the Expert". This is an opportunity to ask a neuro a certain question about the disease.)
• MS Neuro Ratings-this site allows MS patients to post reviews of their neurologists. Obviously, a site like this requires lots of user participation in order to remain current and accurate, so I'd urge all patients to stop here and write a quick review of their doctor. This site could become a very valuable resource for people struggling to find the right physician.

In addition to sites focused on MS news and research, there are many online communities in which MS patients can meet and interact with each other. Many of these sites have both bulletin boards and chat rooms, and each tends to have their own individual personality. Please note, this is by no means in a comprehensive list of all MS communities on the net, just the ones whose doorways I tend to darken.

• MSWorld-I believe this is the largest online MS community. It has thousands of members and many different boards geared towards the varied aspects of life with multiple sclerosis. It is home to the only board I know of devoted to primary progressive and secondary progressive MS. This site is a good place to start for newly diagnosed patients, simply because of the size of its population and a number of topics it covers. Unfortunately, the site no longer allows the posting of direct Internet links, and doesn't allow members to send private messages to each other, which makes it difficult to form bonds with other members. The site is also heavily moderated, so that messages posted do not instantly appear on the board, but must first meet the moderators’ approval.
• ThisisMS-this is a great site for MS research wonks. Lots of very smart people post here, and the site is more concerned with the latest developments in MS news and research than with giving its members the warm fuzzies. ThisisMS has individual boards for most of the current MS treatments, and maintains a running list of all MS drugs in the research pipeline. Don't get me wrong, there are some very supportive members on this site, but the conversations tend more towards research and science and less towards hand holding...
• BrainTalk-this is a smaller MS community, with a nice mix of members offering general support and information about living with MS.
• NeuroTalk- similar to BrainTalk, both in size of membership and in the scope of the discussions it hosts. A generally friendly place to find MS information and support.
• MS Refugees-in all honesty, I don't frequent this site that much, but it does seem to be a supportive community and a good source of information.
• MS Kurmudgeons Korner-this is a private, members only online community, that declares itself a "rainbow and unicorn free zone". It's for people who don't sugarcoat the fact that having MS completely sucks, but who can laugh their asses off in spite of it. I'm one of the moderators of this site, which is an extremely close knit group of just over 100 people from all over the world. Unlike the public sites listed above, this site cannot be accessed by search engines or Web portals, so anything that is said at MSKK stays at MSKK. The site maintains a very strict privacy policy, further ensuring that its members can feel safe discussing pretty much anything. If you think you'd like to join, read to the guidelines and check the site out. We're always looking for interesting folks to be part of the community...

As I said, this is by no means a comprehensive list of MS sites on the web. These are simply the sites in my arsenal, which I feel provide solid information and/or friendly support. Especially for those who find themselves on disability, having MS can be an isolating experience, and I urge those who haven't already done so to check out some of the online communities listed above. It helps tremendously to know that you are not alone in the struggle.

The Best Thing That Ever Happened to Me...

I've had some terrific experiences in my life.

When I was a high school senior, late one night my friends and I broke into Shea Stadium, which until recently had been the home of the New York Mets. Under the cover of darkness, we sat in the stadium's clubhouses and dugouts, and ran around the very same base paths trod by our baseball heroes.

During my fifth ever round of golf, I hit a hole-in-one on a short par three hole.

In 1994, I won $14,000 in the Florida lottery.

But as memorable as these events have been, by far the best thing to ever happen to me is named Karen.

By some unfathomable stroke of good fortune, this incredible woman is somehow my wife. She is beautiful and kind, smart and funny, endlessly patient and relentlessly upbeat. Karen is simply a good soul. Despite my illness, the balance sheet of my life will forever be in the black because it includes her, a credit so positive that it far outweighs any debits that have or ever will come my way.

Of course, nobody is perfect. Much to my chagrin, Karen doesn't enjoy Godzilla movies. She's not that crazy about zombie movies, either, especially right before bedtime. (note to self: great idea for screenplay-"Godzombie")

Don't let anybody ever tell you that it's impossible to meet a great person in a bar, or that the only thing you are likely to pick up in a pub at 4 AM will doubtless require medical attention. I can happily report that both of those pieces of conventional wisdom have been proved wrong, as Karen and I did indeed meet in the early morning hours at a neighborhood saloon, an establishment that neither of us normally frequented. Call it coincidence or kismet, but in the unlikeliest of places I found the stuff that dreams are made of.

Karen and I married, as they say, "later in life", tying the knot in our late 30s. Just around the time of our first anniversary, I was diagnosed with Progressive Multiple Sclerosis. It would have been perfectly understandable if Karen had decided that this was simply too much to deal with and had taken a powder; it certainly wasn't what she signed up for. I was stuck with the illness, but Karen could have opted out, and I often wonder if I would have been as brave and steadfast at the news had the roles been reversed.

Since that unhappy moment, her devotion has been inspirational. She's been by my side through every doctor's appointment and frightening medical procedure, has quite literally picked me off the ground physically and lifted me up emotionally, and has done it all with strength, humor, and grace.

The rest of the world sees a kooky and funny and sometimes intrepid Wheelchair Kamikaze; Karen lives with the human being who struggles daily with the despair that comes with progressive illness, who tries his best to keep an even keel through the storm, but often falters. She is my anchor and my light, my comforter and my guide, my lover and my friend.

When in moments of darkness I ponder whether there is order and justice to the universe, whether we are all alone or guided by some unseen hand, I have only to look to Karen to see that there is reason for faith.

To borrow a line from Brian Wilson, God only knows where I'd be without her...

My MS Diagnosis Is In Doubt

I've always been a little bit different, so it stands to reason that my experience with MS would follow suit. I've had doubts about my diagnosis of Primary Progressive Multiple Sclerosis right from the start, because in all of the many hours I've obsessively spent researching the disease and communicating with other patients, I've never come across another case quite like mine. The neurologists have always labeled my disease "atypical", and now it seems that it might be so atypical that it's actually another disease.

Unlike the vast majority of MS patients, my MRI images have not changed one bit since my diagnosis in May of 2003. They've always shown just two lesions, a small one in my brain, and another at the base of my brainstem. The one in my brain is probably not doing anything too nasty, but the one near my brainstem is causing me tremendous problems. Here are some images of the Wheelchair Kamikaze's brain, with arrows pointing out my two lesions. Click on each image for a larger version.

Quite a winsome brain, wouldn't you say? I'm quite attached to it. Or, rather, is it attached to me? Maybe I'd best see a metaphysician...

The literal meaning of "multiple sclerosis" is "many scars", because the disease is named for the numerous scars, or lesions, that it leaves on the central nervous system of its victims. Unlike the MRI images of most MS patients, which change over time, mine have been rock stable, and rather than multiple lesions, they show only two, so my disease would more correctly be called "Double Sclerosis", if there were such a thing.

Examinations of my spinal fluid have also never shown any of the telltale signs of MS, yet my physical condition has continued to deteriorate steadily since 2003. Back then, my only symptom was a slight limp; fast forward to today and my right arm and leg are pretty much useless, and my left side is weakening, after being left untouched for the first four years of my illness.

Because my disease is so atypical, my neurologists recently decided to review my case and run some more tests. Lo and behold, my longtime suspicions about my diagnosis have been validated; the doctors now suspect that I don't have PPMS, but rather some other neurodegenerative disorder.

Unfortunately, it's not clear what I do have. The possibilities include Neurosarcoidosis, AMN, a spinal tumor (very unlikely, I'd be dead by now), PLS, Sjogren's, and a whole host of much rarer diseases, such as mitochondrial disorders. It could also still turn out to be PPMS. Quite the menu of medical delights, isn't it? Really, I'm not that hungry, I think I'll skip the entrée, check please...

Needless to say, this has all been unsettling, confusing, and scary. Most of the alternate diagnoses offer little in the way of treatment, so, like PPMS, they are currently untreatable and incurable. They're all also progressive, which paints a forbidding picture of the future. So, once again, it's time to gear up for the fight. After licking my wounds a bit, I'll force myself to choose optimism over pessimism, and then start fighting for answers. Whatever this disease is, if it's going to take me down, it's going to take me down swinging like a drunken brawler, with both fists bloodied. Well, maybe not my weak, floppy fist, but I promise, my other fist will definitely be bloodied...

We Shall Overcome

Today is the 41st anniversary of the assassination of Dr. Martin Luther King Jr. His messages of hope, peace, and equality for all human beings still ring loud through the years, and are as vital today as when he first spoke them so eloquently all those years ago.

No matter what your ethnicity, those of us who are disabled form a minority group still struggling for rights that the able-bodied take for granted. There are places we cannot go, and things we cannot do, simply because our towns and cities, and our neighbors and friends, have not made allowances for the difficulties we face.

Many of us in wheelchairs, or scooters, or who must use canes or braces, are also fighting dreadful diseases, most with a fierce courage and fortitude that those not afflicted too easily overlook. Heroes are not only those who perform feats of valor and bravery in a public way, but also those who quietly overcome pain and illness each day, simply doing their best to live their lives and remain a presence in the world.

It is to these unsung heroes, and those who love them, that I hold out a weakened hand and say "We Shall Overcome"...

Please enjoy the following video, and reflect on the life and death of the man who spoke these words, words that will continue to inspire courage and compassion as long as there are people willing to listen.

Kamikaze Visits MS Yoga Class

Last night, my MS clinic held a free yoga class, designed specifically for folks with Multiple Sclerosis. I've long been attracted to Eastern religious philosophies and practices, and if you're familiar with Zen thought, you'll recognize some of its basic tenets in my "Life Bisected, and Dissected" posts on this blog.

I've always wanted to try yoga, especially the breathing and meditation facets of the practice. I've been aware of the mind-body connection since I was a child, when I would quite often throw up at the slightest emotional upset. I guess I was a little bit sensitive. As a toddler, my mother says that I would meet most any challenge with a good heave. I was like one of those cherub fountains in Rome, only with vomit instead of water. Not the most charming trait in a child, and kudos to my mom for her patience, nurturing, and carpet cleaning skills.

Luckily, the throwing up thing didn't follow me into adulthood, as I'm sure it would have been quite frowned upon in the workplace. Still, I experience emotional upset in a very physical way. So, I'm not a hard sell when it comes to the mind-body connection.

It was lightly raining last night, which gave me a chance to do some Wheelchair Kamikazeing on the slick city streets on the way to class. Since it was getting dark out, I couldn't do any videotaping, but zooming through the rain at dusk and startling umbrella toting pedestrians is something I'm going to have to do more of. I figure that as long as it's not raining too hard, my power wheelchair probably won't electrocute me. If anybody knows otherwise, I'd appreciate a heads up in the comments section, before I give myself the "Old Sparky" treatment...

I arrived at the class to find that I was one of four MS patients attending, and that the instructors were two lovely ladies who exuded wisdom and serenity. Each of the students in the class suffered from the different levels of disability. One had been diagnosed only a few weeks ago, and wasn't exhibiting any outward symptoms, another walked with a cane, another used a scooter, and I was there with "Legs", my power wheelchair.

To the accompaniment of candlelight and soothing music, the instructors led us through various exercises, each involving different breathing techniques and low impact stretching, and some included chanting. I've never been much of a chanter, but the combination of deep breathing and rhythmic chanting really had a dramatic effect, helping me to focus inward, achieve deep relaxation, and experience my body. I'd really rather experience somebody else's body, because mine functions a little less well than Quasimodo's, but you've got to play the hand you're dealt.

The instructors tailored each exercise to the individual abilities of their students. My right side is pretty much out of action, and my left side leaves a lot to to be desired, but the gentle ladies in charge were able to work some physicality into even my routine. The class was topped off with a short neck massage and some aromatherapy, and the entire experience was an extremely positive one.

If you get the chance to yoga, I say go-ga.

MS and Me: What a Treat(ment), Part Four

Okay, here's the last installment of my treatment chronicles. Sorry for the length of all of these posts, for a shorter read you might want to try "War and Peace" ...

CellCept: CellCept is an oral drug that suppresses the immune system that was originally developed to combat organ transplant rejection. Do you see a pattern here, in all of the treatments I've mentioned? All current MS treatments seek to either modulate or suppress the immune system. They've all also completely failed me, the little bastards. I'm pretty sure my immune system isn't the mad sculptor that is continually chiseling away at my nerve cells.

Anyway, CellCept... I did this drug for about three months in the spring of 2008. It had absolutely no impact on my MS (shocker!), and I didn't feel much in the way of side effects, except for some extra fatigue. As any MS patient will tell you, fatigue is not something we're lacking, so there's really no need for "extras", thank you.

CellCept has been implicated in opening patients up to PML, the same brain infection that haunts Tysabri patients. It stands to reason that any drug that suppresses the immune system to a significant degree will potentially leave the patient open to opportunistic infections that are normally kept under wraps by a fully functioning immune response. I have a fear that doctors and researchers are really opening up a Pandora's box in tinkering so profoundly with the immune system, which after all has evolved over millions of years to reach its current state of sophistication. Knocking out the vast portions of it seems to be a bit of a gamble, but any port in a storm, I suppose...

Rituxan: Rituxan is a drug in the same family of drugs as Tysabri, called monoclonal antibodies. These drugs target very specific cells within the immune system, in the case of Tysabri, T cells, and in the case of Rituxan, B cells. Without going all biology professor on you, T cells attack potentially harmful invaders themselves, and B cells produce antibodies that do the attacking. Rituxan was developed to treat B cell lymphoma, a role in which it's been very successful at for the last 10 years.

Based on some evidence that Rituxan might help a subset of PPMS patients, Dr. Big Brain and I repeatedly petitioned my insurance company to approve my taking the drug, which required quite a bit of work, because a single round of Rituxan infusions costs about $20,000.

I did the infusions (two intravenous infusions, given two weeks apart) in September 2008, and since then I've been hobbling around with no B cells. So far, I've successfully avoided getting any horrible deadly brain infections, but I also seem to have avoided getting any benefit for my MS as well.

I had really high hopes for Rituxan, but it appears to have failed me completely. For the drug companies, it's anything but a failure, at 20,000 bucks a pop.

So, there you have it, my total treatment history over the last six years. The only thing that ever helped was a massive dose of steroids, which unfortunately left me with dead bones in both shoulders and both hips. Not a terrific trade-off...

So, modern medicine has proved a dismal failure in treating my MS. PPMS is notoriously hard to treat, and if you're an RRMS patient reading this, please don't be discouraged. Almost all of the drugs I've listed here have shown efficacy in beating back RRMS, and there are more drugs just over the horizon that promise even better effectiveness in treating Relapsing Remitting Multiple Sclerosis.

As for PPMS, I'm very hopeful that stem cell therapy will at least allow doctors to repair some of the damage done by the disease, even if stem cells won't cure the disease itself. Personally, I'd be very happy with some nervous system repair. Ecstatic, even.

There are currently stem cell trials going on in various countries around the world, using both adult and embryonic stem cells, and there are perhaps half a dozen clinics offering stem cell treatments to patients that can pony up the big bucks and get their asses to Costa Rica, Israel, or wherever other exotic location the patient’s chosen clinic happens to be. There are no guarantees that any of the treatments these clinics offer will actually help anybody, and some of them appear to be outright scams, but a few are doing scientifically valid work, with varying degrees of success. Within the next few months, I may be "leavin’ on a jet plane", if you catch my drift...

MS and Me: What a Treat(ment), Part Three

Yet more of my "Parade of MS Treatments"...

Tysabri: I did four doses of this controversial medicine in the fall of 2006. Tysabri was originally introduced in 2004, but was quickly pulled from the market when the little fact was revealed that several patients had died during its drug approval trials, from a brain infection called PML. Tysabri works by profoundly inhibiting immune system activity in the central nervous system, which is helpful to MS patients, but this also opens some patients up to infection.

The MS community was rocked by the demise of Tysabri, as its original trial results showed it to be immensely more effective in treating the disease than existing therapies. After further testing, the drug was reintroduced in September 2006, with stringent safety programs put in place, as mandated by the FDA. As with almost all MS treatments, Tysabri is only approved for RRMS patients, but Dr. Big Brain and I decided to give it a go since my condition was clearly worsening again after the temporary benefit I'd seen from intravenous steroids (see part two). It was kind of a scary decision, given the brain infection thing, but I decided early on that if this disease was going to take me down, it was going to take me down swinging.

After four doses of Tysabri, my condition continued to worsen, so we decided that I would come off of the drug. No sense risking potentially deadly brain infections when I was seeing no benefits. Tysabri remains in use today, primarily for RRMS patients, and has proven to be extremely beneficial to many who take it.

Plasmapheresis: Now, this one was more fun than a barrel of demented, sadistic, bloodsucking monkeys. Since Multiple Sclerosis is thought to be the result of a misguided immune system, in theory, at least, stripping some of the components of the immune system from a patient's blood should result in some relief from the disease. The one thing you quickly learn when dealing with Multiple Sclerosis, though, is that "theory", and "reality" are often two entirely different things.

When I underwent plasmapheresis, blood was continuously drawn out of my left arm via an intravenous tube, fed through a machine that looked like it came straight out of a 1950s science-fiction movie, and then returned back into my body through a tube attached to my right arm. The science fiction machine stripped the blood of plasma, which contains antibodies and other immune system components, and replaced it with sterilized plasma from a blood bank.

It sounds neat and simple, but undergoing plasmapheresis was actually kind of horrific. Because a large volume of blood is needed to move through the science fiction machine, the needles stuck into my arms were the size of garden hoses, and, naturally, the nurses had trouble getting them in. This led to my having several fainting spells, and I had to go through this procedure five times in a two-week period. During one of the treatment sessions, a tube came loose, and blood, my blood, started squirting all over the room. I remember sitting there and watching the hijinks, thinking, "this would be really really funny if it wasn't MY BLOOD! MY BLOOD SQUIRTING ALL OVER THE FREAKING ROOM!” The nurses did a nice job of surreptitiously wiping the splattered blood off of the walls, as if seeing them wipe the blood off the walls would be any more upsetting to me than watching the blood get onto the walls...

After each treatment, I was hit with a fatigue more intense than any I've ever experienced before or since. It felt like it was either sleep or die.

When all was said and done, plasmapheresis did absolutely zilch for me, other than give me the unique opportunity to feel like a victim of Count Dracula. Of all the treatments I've been through, plasmapheresis was definitely the worst.

In To Be Continued...

MS and Me: What a Treat(ment), Part Two

Continuing with my cavalcade of MS treatment shenanigans...

Methotrexate: Next on the hit parade came methotrexate, a chemotherapy drug (i.e poison) that suppresses the immune system. Methotrexate was originally used to treat cancers, but over the years it's been found to be effective on some autoimmune diseases. The drug is most often taken orally or intravenously, but my neurologist, Dr. Big Brain, prefers to use it intrathecally. Intrathecally means that it's delivered directly into the spinal column, by way of, you guessed it, a spinal tap. Well, really kind of a reverse spinal tap, because instead of taking stuff out, they put stuff in. Either way, it's a needle in the spine. Dr. Big Brain has had much success with hard to treat progressive multiple sclerosis cases using intrathecal methotrexate. I had no such luck though, because my multiple sclerosis insists on sucking great big fat hairy monkey balls. Through the years I've have had a total of eight injections of methotrexate directly into my spine, to no apparent benefit. Hooray for me.

IV Solumedrol: Solu-Medrol is a corticosteroid, commonly given intravenously to RRMS (Relapsing Remitting Multiple Sclerosis) patients for 3 to 5 days, to shorten the duration of MS relapses. Steroids are very powerful anti-inflammatories, and MS relapses appear to be set off by a dramatic increase of inflammation in the central nervous system.

I have PPMS (Primary Progressive Multiple Sclerosis), though. Traditionally, steroids are not thought to do much for PPMS, because progressive MS isn't primarily inflammatory in nature. Instead, some other insidious, mysterious action is at work damaging and killing nerve cells in the brain and spine of PPMS patients. I'm pretty sure this mysterious cause is, at least in my case, an extremely resilient strain of cooties. Back in the fourth grade, I defied conventional wisdom and did not get my cootie shots after I accidentally brushed up against Weird Henry, and now, 35 years later, I'm paying the price.

In the spring of 2006 I had sinus surgery, and afterwards my MS symptoms went into overdrive. I really thought I might be dying. Dr. Big Brain decided to pull out all the stops, and ordered a 10 day course of IV steroids for me, and sent me to the Helen Hayes Rehab Hospital in Rockland County, New York.

Much to the surprise of everybody involved, I responded dramatically to the steroids. After the third day, I started regaining function in my weak right side that I hadn't had in at least six months. Naturally, I was thrilled. You don't realize how much you'll miss being able to use a knife and fork until you can no longer use a knife and fork.

The experience of being on intravenous steroids for 10 days was quite intense. I managed to get about two hours of sleep a night, and that's with the help of chemicals. I wanted to eat anything that came within 5 feet of me, rocks, bugs, and assorted plastic bits included. If my beloved Red Sox would have signed me, I am positive I would've hit 362 home runs during those 10 days.

Unfortunately, the benefits from the steroids proved to be sadly temporary, and only lasted about three or four months. Really, really unfortunately, my extended stint on intravenous steroids led to my getting Avascular Necrosis, a rare side effect of the drugs, about six months after completing the steroid treatments. AVN is a condition in which the blood supply to the bones in your joints is cut off, leading to the death those bones. I have the condition in both shoulders and both hips, which now often feel as if they're made of razor blades. If I were healthy, I would have already had two total hip replacements. Since I'm in no shape to undergo the surgeries and subsequent rehab, I'm left with hips and shoulders that vacillate between intense pain and "holy crap I can't believe how much this fracking hurts crap crap crap" pain. Take my advice, don't get Avascular Necrosis.

To Be Continued...

MS and Me: What a Treat(ment), Part One

It's incredible to think that six years ago I didn't know a spinal tap from a beer tap, and if asked, I would have probably guessed that an interferon was a creature from the planet Interfero. My everyday vocabulary was blissfully lacking words such as spasticity, paresis, enhancing lesion, cervical spine, monoclonal antibody, immunosuppression, and myelopathy. As much as I enjoy learning new things, I really would have much preferred being forced to learn firsthand the arcane jargon of, say, "fabulous wealth" rather than "multiple sclerosis"...

I've undergone about 1 billion different procedures and treatments since my diagnosis, and I thought it might be helpful to folks if I related some of my experiences. So, here's a rundown of what I've been through, along with a bit of commentary:

Magnetic Resonance Imaging (MRI): MRIs provide a way for doctors to take a gander of what's going on inside your skull and spine, without resorting to the use of saws and scalpels. It's a noninvasive procedure, but does involve being fed into a very narrow tube (think: coffin) within a gigantic machine, for periods sometimes in excess of one hour. The MRI machine makes extremely loud whirring, clanking, and clunking noises while in operation. Some patients absolutely freak out when in the MRI, due to anxiety fueled claustrophobia. Me, I usually fall sleep. Something about the sterility and isolation of "the tube" and the repetitive industrial noises are kind of hypnotizing, and usually have me examining the inside of my eyelids within a few minutes.

Lumbar Puncture (Spinal Tap): Just the phrase "spinal tap" is enough to make even some of the most stalwart patients need an immediate change of trousers. Believe it or not, I've had at least a dozen spine piercing procedures of one sort or another, and honestly, I've found them to be no big deal. I wouldn't recommend them as a recreational activity, but as far as medieval sounding medical procedures go, I think I prefer getting a spinal tap to having a tooth drilled. There is a little burning pinch when they numb up the area in preparation for the jab, but the jab itself is painless. Thankfully, I've never experienced the dreaded "spinal tap" headache, a side effect that can be caused by a drop in spinal fluid pressure due to leakage from the spinal column in the days following the puncture. The pain from such a headache is supposed to be otherworldly, so my opinion of lumbar punctures might be quite different if I'd experienced one.

Rebif: Commonly referred to by those who take it as "Rebarf", Rebif is one of the interferon drugs given to patients in the hopes of cutting down on relapses and slowing the progression of their MS. It's only effective for RRMS (I have PPMS, which means no relapses), and is thought to work by modulating the patient's immune system. I was put on it immediately after my diagnosis, before it was clear that my disease was strictly progressive. Rebif is an injectable drug, requiring those taking it to shoot themselves up every other day. Being neither a masochist or a junkie, the whole self injecting thing was very unsettling, but after the first few times, sticking myself with needles became kind of ho-hum. It's amazing what you can get used to. The worst part about Rebarf was the flulike symptoms that are a common side effect of the interferon drugs. Given the every other day dosing, this meant dealing with chills, aches, and nausea the day after each injection, three times a week. Rebarf did nothing for me, and I was very happy to be taken off it once it became clear that my MS was progressive.

To Be Continued

MS and Me: A Life Bisected, and Dissected - Part Three

Given my newfound appreciation for the value of time, when I looked back on my healthy life I was aghast at how much of it I'd wasted on negative emotions and self-defeating actions. I lost irretrievable, irreplaceable days and weeks and months and years spent depressed, or resentful, or distracted, or obsessed, time that I will never get back, ever.

Rather than burning a torch for some lost love, or agonizing over life's many disappointments, I could have been making the difficult changes needed to generate my own joy. Instead, I chose to allow myself to wallow in despair, embracing it with the fervor of a suicide bomber.

Incredibly, all of those nights I spent sitting on the couch with my head in my hands only accomplished one thing, putting a dent in the cushions. In fact, all that emotional turmoil served only to make the situations I anguished over worse. What woman wants to return to a man who has dissolved into blubbering goo at her leaving him? What problem has ever been solved by a soul consumed with gloom? Eventually, simple self-preservation forced me to let go, each time surprised to find that I had somehow survived the wreckage.

I now know that my relief could have come much sooner, at any time I made the conscious choice to simply let go. What kept me hanging on was an odd mix of ego and insecurity, my ego not wanting to admit that any such disaster could befall a person as wonderful as me, and my insecurities afraid that said disaster only confirmed what a sap I really was..

Of course, heartbreak and disappointment will always hurt, and that hurt must be experienced. But prolonging the pain, and feeding on it, serves only to waste time, whose value rises with each passing day. If you were suddenly told that you had only 100 days to live, how many of them would you choose to spend miserable? Ultimately, we've all been given "X" number of days. We don't know what our "X" is, but each day’s passing brings us closer to it.

Every morning we wake up, healthy or not, given the opportunity to remake ourselves. We do not have to let the person we were yesterday define who we are today. The promise of each new dawn can be squandered by repeating patterns and habits that have always held us back, or we can decide that today we will finally treat ourselves with kindness.

This awareness has helped me deal with the hard reality of disability, and with the horror of watching multiple sclerosis gnaw away at me. Each morning, I contemplate my situation, confirm which body parts are working, acknowledge that it all sucks incredibly hard, and then work up the resolve to make the best of my bad situation. Today, the right side of my body is useless, but I am still able to marvel at my incredibly caring and wonderful wife, post to my blog, hobble around my apartment, and get into my wheelchair and make wacky videos. So, today is going to be a good day.

Tomorrow? Well, tomorrow I will go through the whole process all over again...

MS and Me: A Life Bisected, and Dissected - Part Two

When I stopped working and went on disability, I realized that, in a very real way, I had experienced the death of the old able-bodied me, and was left to mull over the life that the old able-bodied me had led. The understanding that my life had been forever changed transformed the recollection of my healthy days into something of a time capsule, my memories like the curious remnants of a lost history.

I untangled the web of decisions and events that had defined the path my life had taken, and saw that many of the issues with which I'd most wrestled had very little actual impact on the direction of my life, while decisions that I'd made with barely a thought, like choosing to catch a later train, or stay for one more drink, or take the long way home, had proven time and again to have tremendous long-term implications. It turned out that many of the issues I thought to be of vital importance at the time were in reality relatively insignificant in the long run, and that issues to which I assigned almost no importance at all had been tremendously influential.

Now that it had been stolen from me, I was immensely struck by how precious a commodity time, healthy time, really is. Forget about gold, diamonds, fame, or power. The ultimate truth is that time is every person's most valuable possession. The fragility of the daily routine is almost impossible to see while you are caught up in it, but the knowledge that all you take for granted can be smashed in an instant should be the driving force behind every life.

I never, ever, expected to be diagnosed with multiple sclerosis at age 39. Me? That shit doesn't happen to me. After all, I'd been a world-class hypochondriac all my life. I'd courageously battled through imaginary bouts of leprosy, stomach cancer, brain tumors, and dengue fever. Didn't that somehow exempt me from getting a real illness? Hadn't I earned a cosmic get out of jail free card for all of my self-imposed misery? Was all that egocentric suffering in vain? Well, jackass, yes it was...

The fact is, none of the thousands of people each day who have their lives completely turned inside out by disease or accident ever had an inkling that their existences were about to be shaken to their roots. It may be trite to say that life should be lived as if each day may be our last, but there is no greater truth in the world.

Given good health, the potential to change one's entire destiny is bestowed upon each and every person the moment they wake up each day. The only influence that the past has on the present is the influence it is granted, and today is the only today you are ever going to get. Disease steals much of that self-determination away from us. Now, the patient is forced to put blinders on and focus on the fight ahead. While yesterday the choices had been infinite, at some point after getting a serious diagnosis, the menu becomes quite limited...

(Click Here for Part Three)

MS and Me: A Life Bisected, and Dissected - Part One

Multiple Sclerosis has quite obviously had its way with me physically, and it keeps hammering away, day in and day out. But it's also had effects on me that aren't as immediately apparent, effects both psychological and philosophical, that have led me to reevaluate some core values and the way I live my life. Dealing with this disease has forced me to recognize insights that I might never have otherwise gained. I'd never say that multiple sclerosis has had a net positive effect on me, because this disease is a nothing but a stinking, rabid dog from Hell, but it has led me to some important and life-changing realizations.

In effect, getting MS divided my life into two very distinct parts; my life before multiple sclerosis, and the time I've spent since, with the most dramatic changes coming when I was forced to stop working and go on disability in 2007. The day I left my office for the last time was a striking line of demarcation between the life I had known, and a new life that would be spent with increasingly limited mobility and an almost unlimited amount of time on my hands.

It's a strange experience, to suddenly be faced with the prospect of days and weeks and months and years with almost nothing to do. There are doctors visits, the requirements of daily living (eating, bathing, obsessing about Wolf Blitzer's name, etc.), and occasional socializing with friends and family, but other than that I've been largely left to my own devices. My wife works 9-to-5, so on weekdays it's basically "we three", me, myself, and I.

In the months immediately following my going on disability, I was thankful to find a very large time eater in the form of "Star Trek: The Next Generation". One of the cable networks was showing three episodes a day, so I spent many hours accompanying Capt. Picard and my other friends from 24th century on their adventures zipping around the universe. Maybe not the most constructive use of my time, but I did manage to develop an ungodly hatred of the Romulans.

Soon enough though, I ran out of Star Trek episodes, and found myself spending time reflecting back on my life before disability. From the vantage point of my newfound idleness, I could look on my previous life as an entity unto itself, with a beginning, middle, and end. Just as a person can't review a movie while in the middle of watching it, it's very difficult to take a broad view of your life while you're in the middle of living it. The self-perpetuating narrative flow of all of the ongoing elements of life keep a person primarily concerned with the present and future. Once on disability, though, my present was only a void to fill, and, given the insidious nature of multiple sclerosis, the future wasn't a place I cared much to think about...

(Click Here for Part Two)

New Drug Reduces Spasticity. Unless You're an American.

Sativex, a drug produced by GW Pharmaceuticals, has been shown to dramatically reduce the effects of spasticity in multiple sclerosis patients. This is great news, because spasticity truly sucks. For those blissfully not in the know, spasticity occurs when MS patient's muscles get the signal to contract, but not to relax, and therefore remain stiff and bent out of shape. Spasticity can be quite painful and extremely debilitating, and if you've ever seen an MS patient with twisted limbs, spasticity is the culprit.

The catch, for US citizens, is that Sativex is derived from the demon weed, marijuana. The ever benevolent Powers That Be here in the good old US of A long ago decided that marijuana, and any of its derivatives, must be kept out of the hands of red-blooded Americans, no matter how effective marijuana-based therapies might prove to be.

The sad truth is that most of the anti-marijuana legislation passed in the mid-20th century was more concerned with protecting the cotton industry than with keeping the minds and bodies of Americans from being polluted by the scourge of "mary jane". Heaven forbid that hemp-based products take a chunk out of cotton profits, and, oh yeah, marijuana will make you into a lustful, sex crazed, violent hophead. The government was only protecting its innocent, corruptible citizens. Hey you, button that cotton shirt, get your mind right, and go have yourself a brewski...

For those people with MS outside of the United States, Sativex should soon be available to ease your spasticity. I believe it's currently available in commie Canada.

Who knows, maybe soon the United States will actually come up with drug laws that make sense. In the meantime, I think I'll try to uncurl my twisted, spastic arm, hand, and fingers, and go smoke a joint...

Click here for info on Sativex

New Wheelchair Kamikaze Video: Bagel Quest

Well, here's the latest edition of my ongoing Wheelchair Kamikaze video series. This time around we head down Broadway to my favorite bagel shop, and then come home via the scenic route, including a trip through Central Park.

Along the way I encounter pet shopping carts, a curb cliff, a human habitrail, and the irrepressible urge to go off-roading. I hope you have as much fun watching it as I had making it...