At What Price Health?

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For the last few days, I've been pondering a thought exercise that recently popped into my mind. Imagine, for a moment, that an almost miraculous cure for MS has been discovered, one that can alleviate all MS symptoms with a single injection. A patient simply has to go to their doctor's office, get the shot, and, voilà, 24 hours later they are completely symptom-free, their nervous systems restored to an undamaged condition, and their general state of well-being suddenly better than even before they were diagnosed with Multiple Sclerosis.

Great, right? Sign me up!

Only, there's a catch. This "cure" comes with a terrible cost: after a considerable amount of time, every patient treated with this injection dies painlessly in their sleep. In the "X" amount of time before they die, the patient remains in the full bloom of health, right up until the night they go to bed for the final time. The question, then, is what would be the minimum duration of guaranteed health that would entice you to take the shot? In other words, would being restored to perfect health be worth it to you, if you knew with utter sureness that you would die in six months? One year? Five years? 10 years?

Would you be willing to trade a full life of chronic illness for a blissful time during which you would be completely unshackled from the chains of Multiple Sclerosis? For a time free of fatigue and cognitive dysfunction, of muscle spasms, spasticity and profound weakness, of bladder and bowel issues, of the constant daily struggle of dealing with the rigors of this miserable disease? An interval during which you'd have no reason to even think about braces and canes and walkers and wheelchairs and MRIs and neurologists and lesions and a medicine chest full of pills that hardly even seem to matter? When you could walk and run and dance (dance!), drive and play and travel, and finally, finally, once again be that fully functional man or woman that you used to be, that you've dreamed of being since the day MS started taking its dreadful toll?

How many months or years of restored health would be enough to entice you to undergo a simple but profoundly effective treatment that carried with it the ultimate price? Of course, the answer must differ for each of us, based on our own current state of disability, our rate of progression, the level of our misery, and the amount of hope we have that a cure, or even a truly effective treatment, can be found in time to help us.

Certainly, marital status and family situation factor greatly into the equation. Single people, or those without children, might be more willing to sacrifice longevity for a chance, though brief, to be healthy once again. For those who are married, and especially those with children, the calculus gets infinitely more complicated. How much time with a healthy parent would it be worth for a child to then lose that parent? Difficult questions all, and ones I think reach to the very core of our beings.

Personally, after much thought, I think I'd put my "X" at somewhere around a year or a year and a half. If a physician approached me with a syringe, and told me that the injection would guarantee me 12 months of perfect health, but at the end of that 12 months, I would die painlessly in my sleep, I would give the offer serious consideration. Of course, I'd want more time, all the time in the universe, but this thought exercise requires that we consider the absolute minimum amount of time we would settle for.

One year would give me time enough to experience all of those pleasures in life that I now miss so terribly, to travel to the places my wife and I have always wanted to see together, and to spend time with those who I hold closest to my heart. I don't have children, so that's not a consideration. I do have hope that stem cells offer real promise as a treatment, but I'm unsure that this promise will be fulfilled in time to help me. I have my doubts about many of the avenues currently being explored by MS researchers, and though strides are being made, I'm uncertain that the mysteries of MS will be fully unraveled anytime soon, and given my rate of progression, soon is the only timeframe that really matters to me. In addition, there is now question as to whether what I have is even really MS, and what chance is there that some mystery illness will be solved before it puts me into a state I deem to be simply unbearable?

So what about you, dear reader? What's the minimum amount of time for which you'd be willing to trade your life for perfect health? What's your "X"?

Toyota Develops Mind Controlled Wheelchair

Well, this is pretty amazing. The big brains at Toyota have developed a wheelchair that is operated through the power of the mind. By reading the user's brain waves, the chair can decipher the direction the user wants to travel.

As huge an advance as this might be, I can foresee problems with this technology in the future. There I'll be, happily zipping down the street on my mind controlled way, when an especially short miniskirt, a Lamborghini, or a particularly cute Labrador Retriever passes me by. Suddenly, the chair starts whirling like a dervish, and soon launches me directly into traffic or through a plate glass window. Given my propensity for daydreaming, I might set out for a doctor appointment, and wind up in the Gobi desert...

I know my mind, and believe me, it's not to be trusted to follow a straight line for more than 30 seconds.

Barking up the Wrong Tree...

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A promising experimental MS drug, targeted at patients with progressive disease, has failed its late stage trials. The drug, Dirucotide, was reported to have shown remarkable effectiveness in early-stage trials, and, as there are very limited treatment options for those with progressive MS, much anticipation accompanied the compound's hoped for success. To put it bluntly, the fact that this drug failed really sucks.

Dirucotide was designed to work by restoring a patient's immunological balance, thereby suppressing the immune attack that is supposedly behind the MS disease process. Its failure highlights two important points; first, that early stage trial results can be very misleading, and second, that perhaps it's time to look beyond tinkering with the immune system when searching for answers to the MS puzzle.

My neurologist has been warning me for years to take all published early-stage trial results with several grains of salt. More often than not, there are financial motivations behind their release; in the case of large public companies, to drive up stock prices, and in the case of smaller, private companies, to attract investor cash. One must never forget the power of the almighty dollar.

The unfortunate reality is that Multiple Sclerosis has become a multibillion dollar a year industry, and competition among competing drug manufacturers is intense. Stock prices rise and fall on bits of news and hints of future success or failure, and pharmaceutical companies provide a steady stream of positive information designed to pique investor interest. Dirucotide, for instance, was initially developed by a small biotech company, BioMS. After the drug's success in early trials, pharmaceutical giant Eli Lilly stepped in to partner with BioMS for the much larger late stage studies. Unfortunately, both companies were burned by the false optimism generated by the drug’s early positive results. This is not to say that those results were deliberately misleading, but they were put to very good use by the PR folks.

Virtually every MS drug on the market seeks to either modulate or suppress the immune system. According to the autoimmune theory that now dominates MS research, an aberrant immune response during which a patient's immune cells attack their own nerve tissue is the driving force behind the disease. Therefore, logic dictates that suppressing this immune attack should alleviate the ravages of the MS. One must simply get the body to stop disrespecting itself.

In patients with Relapsing Remitting Multiple Sclerosis, who exhibit high levels of inflammation in their central nervous systems, this approach has seen success, as is evidenced by reduced relapse rates and improved MRI images. In patients that eventually transition to or start out with progressive disease, in which there is typically very little evidence of inflammation, these therapeutic approaches have proven to have little or no value.

Left untreated, the vast majority of RRMS patients eventually transition to the progressive form of the disease. Even when treated, it's not clear that today's MS drugs do more than just delay this transition. Once a patient has transitioned to the progressive form of MS, drugs targeted at the immune system have proven to be virtually useless in arresting disability progression. Given that fact, it seems to me to that the immune response targeted by all current MS drugs is more a symptom of the disease than its cause.

In my mind, treating MS by suppressing the immune system is like treating a broken leg with painkillers. The patient stops hurting, but nothing is done to address the underlying cause of the pain. Of course, this analogy is a bit simplistic, as treating a broken leg with painkillers has no actual therapeutic value, whereas immunosuppression and modulation in RRMS patients has been shown to have more than cosmetic effect.

Still, the fact remains that there is some unknown factor driving the Multiple Sclerosis engine, a factor which continues to damage nerve tissue after the hallmark immune response subsides. Might it not be that the immune response seen in MS patients is not an attack directed at their own tissue at all, but is an overwrought and hyper-aggressive attempt by the body to respond to an as yet undiscovered "X factor"? Unfortunately, very little privately funded research is targeted at discovering what this hidden culprit might be.

Virtually every drug now being developed to treat MS is meant to either suppress or modulate the human immune system. Over 70% of medical research in the United States is funded by publicly traded pharmaceutical companies, whose legal mandate states that they are beholden to their stockholders, not to the patients taking their drugs. The job of a pharmaceutical company CEO is to increase his company's profits, and thus the price of its stock. Once again, it's all about the money, honey. When there are billions of dollars being made by marketing drugs that only marginally address the root cause of serious illnesses, the profit motive runs counter to the desire to find cures. To their credit, the drug companies have managed to develop products that have turned previously fatal diseases such as diabetes and AIDS into chronic illnesses, but this success has also served to make the victims of these diseases lifelong consumers of highly profitable pharmaceutical products.

I'll end with a plea to the MS researchers of the world: Please, please, stop focusing solely on the immune component of the Multiple Sclerosis disease process, and instead set your sights on whatever it is that might be destroying a patient's nervous system, or might be the root cause of a patient's immune system going on the attack.

Folks, it's time to start digging a little deeper...

Help Yourself...

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As a patient dealing with a chronic, debilitating illness, it's of the utmost importance that you take control of your own journey through the healthcare system. It's very easy to just throw up your hands and leave your fate to the doctors in whom you entrust your care, but I've slowly learned that by doing so you run the risk of getting lost within the system.

We all would like to think that we are our doctors’ star patient, constantly at the forefront of their minds. Unfortunately, this is simply not realistic. Medicine is a business, and, as practiced in the United States, is a volume business at that. As well meaning as our physicians and their staff might be, the fact is that every year they see hundreds if not thousands of patients. During the time that you are in their office, on their examination table, you can expect to command your doctor’s full attention, but as soon as you leave the office they must invariably turn that attention to the next patient. This is not an indictment of physicians, the overwhelming majority of whom strive to be the very best healers they can possibly be, but human nature is human nature, and a person has only so much attention to give.

Multiple sclerosis, like other chronic degenerative diseases, is a very complicated illness, one whose cause remains unclear, and whose treatments, and their effectiveness, vary widely from patient to patient. Therefore, it is vitally important that each patient maintain a clear understanding of their own particular case history, and educate themselves as best they can about the nature of their own disease. Nobody would expect a patient to comprehend the complex biology of nervous system disorders, but at the very least, a responsible patient should arm themselves with a complete knowledge of their treatment options, maintain complete files of their test results, and understand the idiosyncrasies of their own case.

Both on the Internet and in real life, I've run into far too many patients who are woefully ill-informed about the sickness that might cripple them, and who therefore don't give themselves the best chance at fighting the disease. A few years ago, I spent a week in a rehab hospital undergoing intense physical therapy. I was shocked at how many of my fellow MS patients at this facility were sadly unaware of the basics of their disease and the treatment options available to them. Some of these patients had made repeated visits to the hospital to undergo rehab, yet had only the scantest knowledge of what MS was doing to their bodies, and of the therapy options available to them. Some were in a form of denial, but it seemed that some had simply never thought to empower themselves with knowledge, instead expecting their doctors to provide them with any and all information they might need, and to make their treatment decisions for them. Certainly, a patient should never be their own doctor, but forming a partnership with your doctor is crucial in fighting a disease like multiple sclerosis.

The need for self advocacy also holds true when dealing with the staff of a doctor's office or clinic. At many large treatment centers, there are many layers of administrators and nurses between the doctor and the patient. Some offices are more efficient than others, and sometimes phone calls are not returned, messages do not get through, and test results are poorly communicated, leaving the patient in the uncomfortable limbo of waiting for a response that might never come. In these cases, there's a thin line between persistence and being a complete pain in the ass, and that line, when crossed, is entirely counterproductive.

There have been times when I've literally sat staring at the phone, anguishing over whether I should make yet another phone call to a physician's office, in the hopes of getting a much needed answer or anticipated test result. There is no ready number to how many phone calls is too many phone calls, or how much time spent waiting is too much time spent waiting, and each situation requires a judgment to be made on the part of the patient. Despite such occasional frustrations, I try to make it a rule to always be polite in my communications with office staff, and to let staff members know how truly thankful I am to them when they do provide help and assistance.

Although one invariably runs into the occasional bad egg, most clinic personnel are well-meaning and hard-working individuals, and any lack of responsiveness on their part is more often than not an indicator of just how busy, and sometimes overwhelmed, they are. Just as you never want to piss off a waiter, who might spit in your food, you should try to play nice with the staff of your doctor's office, because quite often you'll spend more time talking to them than to the doctors themselves. And, really, what's the point of being an asshole?

So, educate yourselves constantly, keep extensive documentation of all test results and office visits, and despite your frustrations, try to be nice. Above all, don't be afraid to take responsibility for your own well-being.

Please, Check Your Meds!

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As a patient dealing with chronic illness, I regularly visit a number of doctors, each of whom prescribes for me a variety of pharmaceutical concoctions. Along with my primary neurologist, I see a primary care physician, a urologist, a neuro ophthalmologist, an endocrinologist, and a pain management specialist. Each of these MDs makes good use of their prescription pads, and subsequently I have enough pharmaceuticals in my bathroom to open my own apothecary.

I'm sure this delights the hell out of the big pharmaceutical companies, who rival insurance companies and the New York Yankees on my list of most detested entities on Earth (one of these days, I'll post a long and barely coherent rant about Big Pharma and its rancid influence on the healing professions), but it's left me with literally handfuls of pills to take each day.

As I'm chugging down these little vessels of wonderfulness, in their dizzying array of different shapes, sizes, and colors, I often wonder if they might be doing me more harm than good. I mean, here I am, in possession of a finely balanced symphony of physiology, a body that has taken millions of years of evolution to develop, and I'm two or three times daily ingesting substances that profoundly manipulate the workings of many of its systems. Of course, in my case, evolution as provided me with a body that probably should have been recalled, but that's besides the point. A little research into many pharmaceuticals reveals that their mechanisms of action are poorly understood, other than the fact that they appear to work. Kind of like magic; here's a quarter, now it's gone, except it's not really gone, now is it?

On their own, each of the pills we take may be beneficial, or at least not harmful, but when taken in addition to other medications, serious consequences can result. Drug interactions are a significant cause of death in this country, and as responsible patients we shouldn't rely on our doctors to keep track of each and every prescription that has been given to us.

There is a terrific website, provided by drugs.com, which allows you to enter the names of all of the prescription medications you're taking, and then alerts you to any possible problems with drug interactions. The site even allows you to save your list of drugs, so you can add to it the next time you're given a prescription. I urge everybody reading this post to please, please visit this website and check your medications. I did so yesterday, and was alerted to a possibly severe interaction between two of the drugs I'm currently taking.

So, if not for yourself, do it for the Wheelchair Kamikaze. I can't afford to lose any readers. Click this link and check all of your medications.

Really, do it now.

Frank McCourt, Noted Author and My High School English Teacher, Dead at 78

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Frank McCourt died today, after developing meningitis while struggling with melanoma.

Mr. McCourt won the Pulitzer Prize for his memoir "Angela's Ashes", but more importantly (to me, anyway), about two decades previous to his receiving literary accolades, he was my high school English teacher. I had him for two semesters, once in my sophomore year, and then again as a senior.

To say that his classes were a little offbeat would be a serious understatement. More often than not, Mr. McCourt, sporting bloodshot eyes and the faintest whiff of last night's pub, would conduct a monologue about the vicissitudes of life and the various lessons he had or hadn't learned from them, in his always witty and heartfelt Irish brogue. He'd go on little tirades about how his bankrupt brother could get credit cards but he couldn't, or how the historically recent notion of "falling in love", with its likening of romantic attachment to some cosmic dog shit that one accidentally steps in, has led human beings to plumb the depths of misery...

When the class's attentions actually did turn to the study of English, we would often read Mimi Sheraton's restaurant reviews in the New York Times, the prose of which could transport Mr. McCourt to a state of rapturous joy. It wasn't until I read Angela's Ashes nearly 20 years later, that I understood his fixation on Ms. Sheraton's columns. He'd grown up quite literally starving, and the eloquent superlatives lavished on edibles by Mimi Sheraton must have put words to his own lifelong fascination with food.

When I mentally time travel back to high school, I often find myself sitting in Frank McCourt's classroom.

He was my favorite teacher.

Rest in peace, Mr. McCourt...

The Problem with Progression

Of late, the MS has been giving me a pretty good ass whuppin'. It's getting harder for me to stumble around my apartment, and I'm pretty close to making the decision to start using my wheelchair for indoor as well as outdoor mobility. Up until now, I've used the chair exclusively for my travels through the beehive of streets in New York, but now the uncomfortable realization is hitting that I also need it for excursions from the bedroom to the kitchen. It looks as if the progression of my disease is about to force me to crash through yet another psychological barrier.

During my first visit to an MS specialist, I remember the doctor going on about "stopping the progression of the disease". I was new to the world of MS, my head was spinning with thoughts of "spinal lesions", "lumbar punctures", and "brain MRIs", and I simply could not process what he was talking about. Progression? What the hell is progression? I have a little limp in my right leg, upsetting yes, but hardly the end of the world...

Well, now I'm all too well aware of the meaning of progression. In six years, that little limp has reached out and put a choke hold on much of the rest of my body, and try as I might, I just can't seem to wriggle free. I could list a litany of my defective body parts, but what's the point? It would most likely just need to be updated again next week. Each new day seems to bring with it a changing set of circumstances, and unfortunately, those changes don't ever seem to be for the better.

To state the obvious, the problem with progressive neurologic disease is that it progresses. Little by little, you lose yourself to your illness. As great a toll as this progression takes on the physical body, the psychological impact of watching yourself whither away over weeks and months and years cannot be overstated. Back in the dark ages of my MS experience, I'd sit in the neurologist’s waiting room and see other patients in their wheelchairs and scooters, and thank the heavens that I was not one of them. Of course, I knew that they did not just one day materialize disabled, and that they had arrived at their current physical conditions incrementally, over time. I just couldn't fathom that I would follow the same road. I'd look at those poor souls, my mind would reel, deliberately set me apart from them, and quickly force my attentions elsewhere.

Now, I'm the guy sitting in that waiting room in a wheelchair, and I can see the less disabled patients looking at me through familiar eyes. I make it a point not to appear dour or downtrodden, and I'm always quick with a wisecrack or two, but I know too well the quiet horror they are feeling. Truth be told, they are not wrong in feeling it. As good a spin as you can put on it, as upbeat and determined as you might be in the face of it, the prospect of doing battle with an insidious enemy that slowly swallows you from the inside out is a perfect example of why human beings come equipped with a healthy capacity for denial.

No matter what stage of the disease you're in, peering forward carries with it an element of dread. The endless road of progression, if left unchecked, must ultimately lead to an extremely ugly place. Along the way there are milestones to be reached; the first time you can no longer climb a flight of stairs, the first cane, the realization that you can no longer sign your name.

At first I measured the disease’s progressive toll in the slowly shrinking distances I could walk, first in miles, then blocks, then yards, and now feet. Every holiday and special event has become a psychological landmark, a yearly milestone from which I can look back to the same moment in previous years and assess just how much I've lost, while simultaneously wondering about the scope of the wreckage I'll be dealing with in another year’s time. Will this Super Bowl be the last that I can watch from a couch that I've walked to under my own power? Or the last that I will be able to feed myself chips and dip? Or the last that I'll be able to manipulate the remote control? Or, simply, the last?

Ongoing disease progression leaves us little time to mourn the losses we've suffered. If one were to literally lose a leg, as horrible as that would be, the trauma could be experienced, mourned, and then adapted to, leaving a person in a state of permanence, albeit an unfortunate one. With progressive illness, the losses just keep mounting, and life becomes a constant exercise in adaptation. I haven't had the chance to fully mourn the loss of the use of my right hand, because I'm aware that my left appears to be following suit. I watch people happily strolling through the park, and feel a deep yearning, but that yearning is shadowed by the apprehension of insults yet to come. As layer upon layer of disability piles up, the process of mourning any single loss gets overwhelmed by the sheer volume of them all.

Strangely, and thankfully, I've found that the reality of each new stage of disability does not approach the horror that accompanied the anticipation of it. Back in the days before my illness, I'd have never thought I'd have the capacity to adapt to the level of disability I'm now experiencing. I once would have categorized the possibility of my being forced to rely on a wheelchair as unthinkable, but when that moment arrived, the world somehow kept spinning. The loss of functionality in my right arm and hand has led me to learn how to do things with my left, and through all manner of adaptations, I've managed to maintain an acceptable quality of life. So far, at least, the realities of encroaching disability have not been as ghastly as I'd imagined they would be. I am constantly aware, though, that there will come a tipping point, when even the barest illusion of normalcy will disintegrate under the weight of some new undeniable reality.

Of course, I am not without hope. Even without intervention, MS is an unpredictable beast, and patients with the most aggressive forms can sometimes find themselves reaching plateaus for years at a time. Medical research is shedding new light on the disease on an almost daily basis, and the promise of stem cells to repair damaged nerve tissue is steadily moving closer to becoming a reality. Trials of neuroprotective agents are currently underway, and radical new theories about the very nature of multiple sclerosis are finally being given proper scientific scrutiny.

Still, though, the disease marches on, the struggles become harder, and, with the help of friends and loved ones, the best we can do is strive to stay rooted in the moment...

Get Involved! Support Creating a National MS Registry...

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Okay, fellow MS people (and those who love us), here's a chance to have your voices heard by the powers that be in Washington. The National Multiple Sclerosis Society is organizing an e-mail campaign urging the passage of The National MS and Parkinson's Disease Registries Act, which would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.

Believe it or not, the last time a national study on the incidence and prevalence of multiple sclerosis in the United States was conducted was way back in 1975. A lot more than hairstyles and the width of lapels has changed since then, and a new study could shed light on a wide range of issues impacting the research and treatment of our shared enemy, multiple sclerosis.

The NMSS has made it easy to get involved. Simply click on this sentence to navigate to a webpage that they've devoted to the cause, which will allow you, with a few simple clicks of the mouse, to send e-mails in support of this important legislation to your senators and congressmen. While you're at it, you can sign up to become an "MS activist", and become involved in all of the Society's efforts to lobby on behalf of MS patients nationwide.

So, say it loud: I have MS, I'm mad as hell, and I'm not going to take it anymore! Take action and help yourself while you're helping others...

We may be gimpy, but we ain't wimpy...

The Un-Comfort Zone

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My recent trip down to Bethesda, MD really accentuated just how disabled I've become. Placed in unfamiliar surroundings, the veneer of normalcy that I cocoon myself in at home quickly comes apart at the seams.

Not that I'm waltzing around my apartment with the dexterity of a spider monkey, but I've incorporated all kinds of workarounds and improvisations into my everyday life that allow me to do the things I need to do. If I'm alone, or with my wife, beyond the view of outsiders, the fact that a caffeinated snail could beat me in a foot race has simply become an accepted fact of life. I know it, my wife knows it, and life goes on...

As my level of disability has gradually increased, though, my efforts to remain functional have led me to develop ever more elaborate choreographies. Getting into the bathroom now requires an intricate series of clumsy maneuvers. Once I've reached the threshold of the loo, my "good" left hand, holding my cane, reaches in and flicks on the light switch. Then, with one foot on the tiled bathroom floor, I hang the cane on the towel rack, and my now empty left hand grabs at the doorknob for balance. Using the knob as a fulcrum, I stumble into the bathroom, and then swing the door shut, in one motion releasing the knob and then frantically reaching towards the sink for support. My every move requires some sort of compensatory action to get around the fact that my right side is completely uncooperative, but over time, and with repetition, these actions have become more or less routine.

Likewise, getting around my neighborhood in my power chair now seems commonplace. The road map in my head is aware of which curb cuts are suicidal, which sidewalks are pockmarked battlefields, and which routes provide the least bone jarring path to my usual destinations. After using the chair around the neighborhood for a year, these calculations have all become automatic.

Take me out of the familiar, though, and I'm increasingly helpless, as our recent trip down south unnervingly demonstrated. Making a highway rest stop is now anything but restful. Once parked, I slowly and painfully unfold my obstinate legs and drag myself out of of the car. Karen pulls out the collapsible manual wheelchair we use when traveling, and sets it a step or two from the passenger side car door. Using the roof of the car for balance, I pivot and then plop myself into the chair. My fate now rests entirely in Karen's hands. I have been rendered a wisecracking blob of flesh and bone.

I confess, I detest the manual chair. The power chair can be a hoot, and as I've mentioned in other posts, I almost feel like it gives me superpowers. Karen sometimes even hitches rides on the back of it, when we're traveling long distances over reasonably smooth pavement, much to the amusement of passersby. The manual chair, on the other hand, makes me feel about as useful as a pile of manure in a wheelbarrow. I've tried to make the best of it, sometimes shouting, "Mush, mush, onward Huskies!” (much to Karen's chagrin), but let's face it, you can't polish a turd.

Once arrived inside the rest stop building, attempting to use the men's room has become an act of pathetic derring-do. As the other fellas enter and exit the facility with various degrees of urgency, there I am doing a slothlike wobbling shuffle, gripping my cane with white knuckles as I desperately try to avoid any wet spots and discarded paper towels on the tiled floor. What used to be just a quick stop for a pee is now a nerve-racking trek through a not-so-funhouse filled with potential hazards.

The same can be said for navigating supposedly "accessible" hotel rooms. In my experience, most are "accessible" in name only, having gained that designation through the implementation of mandated modifications made without any thought given whatsoever to real-life usability. The shared tile between the bathroom floor and the roll in shower is usually silky smooth and becomes a skating rink when wet, shower seats are often installed as far from the actual showerhead as is architecturally possible, and handrails are attached in what appear to be abstract impressionist patterns.

Whereas at home I know my workarounds by heart, when confronted with a new layout, my every move requires planning and consideration. Going about even the simplest task is physically exhausting and mentally taxing. Weaving between thoughts of "Hmm, should I grab the wall and then the edge of the dresser?", are internal exclamations of "Holy crap! I am an honest-to-goodness cripple!”

Away from my home base, my carefully crafted illusion of normalcy gets stripped naked, and exposes my true state of vulnerability not only to the world outside, but most disconcertingly, to me. Assuming the persona of the Wheelchair Kamikaze is therapeutic; the reality of being the "Going to the Men's Room Kamikaze" is anything but.

Still, one day follows another, and we learn to suck it up and force or fake our way through. It's incredible what a person can get used to, isn't it?

My Results from the National Institutes Of Health...

Well, it seems like I have some of the doctors at the National Institutes of Health scratching their heads a little bit. Leave it to the Wheelchair Kamikaze to keep things interesting...

According to the doctor who examined me during my visit to the NIH, my MRI results show that I should be in worse shape than I actually am. That's kind of hard to believe, because I'm really not in great shape. My right side is pretty much useless, and my left side is getting kind of funky.

The NIH doctor explained that my one and only problematic lesion is high up on my spine, at the juncture where the spine meets the brainstem, and is quite large and invasive. Since all of the signals from my brain have to pass through the real estate that this bestial lesion (henceforth to be known as "Adolph") is camped out on, the potential is there for it to cause some pretty bad mojo. Thankfully, for whatever reason, Adolph has so far not lived up to that potential. It's like I have a rebellious underperforming teenage lesion, but in a good way...

When the radiologists at the NIH first looked at my MRI images, they assumed that I was suffering from a disease more like Transverse Myelitis than MS. Not knowing my clinical history, they surmised that Adolph occurred during an inflammatory event some time ago, and that whatever disability I had acquired at that time had remained constant.

There's no evidence of any ongoing inflammation on my MRI images, so the images don't reveal evidence of active disease. When the radiologists were informed that I've instead suffered a slow accumulation of disability over the last six years that continues to this day, they were surprised. It seems that there's a disconnect between my MRI images and my clinical presentation.

In general, for most MS patients, there is little correlation between lesion load and disability. In my case, though, since Adolph is my one lesion of consequence, and it's in a very problematic spot, it would appear that the correlation between the severity of Adolph and my physical condition should be higher. Lucky for me, it isn't. Go figure...

Since I'm experiencing ongoing disease progression, and Adolph has neither changed in appearance nor been joined by any villainous friends in the six years since my diagnosis, there has to be some other process at work that is damaging my nerve fibers. Identifying that process is the million dollar question. My diagnosis could still be MS, albeit a very atypical case, especially since I've tested negative for most of the other likely candidates. I guess I just may be Wheelchair Kamikaze, international man of mystery diagnoses...

I'm now scheduled to go back down to the NIH in Bethesda on July 16 for some more testing. They're going to do some advanced MRI scans, including an MRI spectrograph, which may shed some light on the biological makeup of Adolph, and another scan that might indicate whether or not the nerve fibers within Adolph are severed.

Needless to say, I'm beyond grateful that the NIH has taken an interest in my case, and that some of the best minds in the business are involved. The NIH doctor is going to consult with my primary neurologist, who is himself a brilliant MS specialist, and share all of their findings and test data. I'm hopeful that all of this testing will prove beneficial, as traveling back and forth to Bethesda is kind of exhausting...

As I said in my previous post regarding going down to the NIH, my being seen there is really a no lose proposition. At worst, I'm contributing to the greater good and helping to advance scientific knowledge, which I hope will be of value to future victims of this horrible disease. At best, who knows, maybe all this effort will pay off, and save my sorry ass. You've got to be in it to win it, know what I mean?

New Wheelchair Kamikaze Video: In Search of Audrey Hepburn

Here's my latest video effort. At the request of a friend, my cousin Todd and I embark on a quest to find a statue dedicated to Audrey Hepburn, located on the east side of Manhattan. The trip takes us through Central Park and the heart of midtown Manhattan, and obstacles abound...

Hope everyone has as much fun viewing it as much as I had making it...

My Visit to the NIH: Our Tax Dollars at Work

A few months ago, while leafing through one of the many MS publications that find their way into my mailbox, I came across a notice about a study being conducted by the National Institutes of Health that sought to compile a large database of MS patients who might be used in future studies. The NIH was seeking subjects to come down to their facilities in Bethesda, Maryland for a complete diagnostic workup, so that they might be classified as having a definite diagnosis of MS, and thus be eligible for future research studies. The NIH would also use the opportunity to compile data to be included in a wide-ranging "Natural History of MS" analysis.

Since my diagnosis has been called into question, this sounded like a terrific opportunity to get some questions answered, and to take part in research that might eventually help to unravel the mystery of MS. It seemed like a no lose proposition; I could help myself by having NIH scientists evaluate my case, and I could help in the fight against MS by submitting to their research protocols. The study would give me the opportunity to donate my body to science without having to go through the inconvenience of actually dying.

I called the study’s intake telephone number, and spoke to a helpful nurse at the NIH’s Neuro Immunology department. Given the fact that I live a considerable distance from Bethesda, she was at first a bit discouraging about my taking part in the study, but as I explained the atypical nature of my disease presentation, she suggested that I forward my medical records to the department. I faxed my records over to them the next day, and about a week later received a phone call telling me that I had been accepted into the study. Not only was I accepted, but the NIH would also pay for me to stay two nights in a hotel near their facility. Very cool.

My wife and I drove down to Bethesda last Tuesday night, and were seen at the National Institutes of Health's main facility on Wednesday afternoon. The facility is located on a large campus, comprised of about 30 buildings. The main medical center is the second-largest building in the federal government, smaller only than the Pentagon. To say that the facility is impressive is an understatement. Every person we interacted with, from desk clerks to nurses to physicians and researchers, was absolutely top-notch, and not only extremely proficient at their given job but friendly and personable as well.

Over the course of two days, I was examined by the NIH’s Neuro Immunology staff. I was given some physical and cognitive testing, and a thorough neurologic examination. Blood samples were taken, and I underwent brain and C-spine MRIs.

The doctor who examined me was absolutely superlative, a brilliant woman who spent almost 5 hours over the course of two days interacting with my wife and me. She not only took a full medical history, and conducted a comprehensive neurologic exam, but also answered all of my numerous questions in a thoughtful and deliberate manner, and indulged me in long conversations on topics ranging from the many different theories regarding the MS disease process, the influence of Big Pharma on medical research, and the promise of future therapy options (stem cells, neuroprotective agents, etc.). She was insightful, genuinely interested in my case, and frank and honest in her assessments. While very compassionate, she also maintained a strict scientific perspective. I really can't praise her highly enough.

After looking over my previous MRIs and medical records, the doctor advised me that my case did seem quite atypical, and that I might not be able to get a definitive diagnosis simply because my disease profile does not fit the diagnostic criteria of Primary Progressive MS, or any of the diseases that could likewise be causing my symptoms. The bottom line is that I have a big honking lesion right at the base of my brain, a very problematic spot, which is causing all of my neurologic problems.

This Monday, the staff of researchers and physicians of the Neuro Immunology department will go over all of my new MRI images and blood test results, along with the information gathered from my physical examination and medical history, and try to come up with a determination regarding my disease. I should receive a phone call on Tuesday or Wednesday about their findings, and suggestions for future treatment options and/or diagnostic testing.

If it's determined that it's probable that my disease is a form of MS, I'll be asked to continue with the study, which would involve my going down to Bethesda in July for some additional MRIs and a lumbar puncture. Whether I continue with the study or not, I was told that I am now part of the NIH system, and was encouraged to use them as a resource regarding any questions or issues I might have regarding my disease and future treatment options or testing. I was also told that I could request another evaluation at any time, should changes in my disease warrant it.

All in all, whether or not I get a definitive diagnosis, my experience at the National Institutes of Health in Bethesda was an extremely positive one. I felt like I was doing my part to help fight this damned disease, and it was inspiring to find such a well-run facility, devoted entirely to pure medical research, staffed with exceptional people, and funded solely by our taxpayer dollars. My visit there helped further my faith that, despite the dysfunctional nature of much of our health care system, the puzzle of multiple sclerosis, and many other diseases, will eventually be cracked.

Pinball or Pincushion?

Throughout the course of my illness, I've pretty much been able to avoid falling into the "why me?" trap by rephrasing that question, "why not me?” I've experienced a few one in a million positive events in my life (winning a pick five lottery and getting a hole-in-one in golf, to name two), so ringing one up on the negative side of the ledger really doesn't surprise me. Getting MS is a doozy of a negative, and sucks in every way that something can suck, but I've thoroughly read my lease on life and it unfortunately doesn't include an exemption on getting suck ass diseases. I don't often succumb to self-pity, as I realize that triumph and disaster are two sides of the same coin, and both are total impostors.

Rather than "why me?” the question that does haunt me is "how me?” I'd really like to know just how I managed to pick up this particular affliction. Since the best neurologic minds in the business still haven't determined the underlying cause of MS, there is no good answer to this question. I'm certain that in order to get MS a genetic predisposition is required (my mom has Type I Diabetes), and recent research indicates that all MS patients are infected with the Epstein-Barr virus (as am I, as per blood test results).

So, I have two of the factors that science tells us lead to Multiple Sclerosis. Still, not everyone with a genetic predisposition and an Epstein-Barr infection gets MS, so there have to be other triggers involved. These triggers may be different for different patients, and what I want to know is just what other factors did I run into, and when did I run into them? Was there some way I could have possibly avoided them?

In effect, I want to know whether I am a Multiple Sclerosis pinball, coming to the disease through a random series of events that were absolutely beyond my control, like a pinball getting whacked around a pinball machine, or a Multiple Sclerosis pincushion, born to be afflicted, fated to get MS no matter the direction of my life?

On a philosophical level, this is a question of free will versus destiny. Of course, the answer to the question of how I got MS is really of no consequence, since I have the disease and the knowledge of how I got it will never change that. Still, I find myself sifting through the pieces of my past, trying to pinpoint when the first signs of my illness showed themselves, and if there was any discernible events or episodes that preceded them that may have set the disease process in motion.

This is a fools errand, to be sure, but the human mind strives to find patterns in randomness. We look at clouds and see animals, or faces, or an avocado with 6 feet and hairy armpits, and we likewise look back at our lives and try to make all the pieces fit. We make choices every day that can and do completely alter the courses of our lives, but ultimately, despite our choices, would the outcome be the same? Do the infinite meandering paths that my life might have taken all converge at a point called MS, or were there roads not taken that might have curved around it?

I do believe that we have certain lessons we are meant to learn in this life, some bits of wisdom that we must acquire. My experiences with MS have provided me with some important insights, many of which I've tried to express in this blog. Some of them are lessons that, upon looking back, I seem to have been actively rejecting back in my healthy days. If I'd been more receptive to them, would there have been no need for the universe to whack me upside the head with the MS stick? Perhaps it wasn't my physical actions that led me to MS land, but my obstinate and willful avoidance of life lessons that were being gently lobbed at me that resulted in the catastrophic obliteration of normalcy that MS has wrought. Did the universe resort to screaming bloody murder because I simply refused to listen to its whispers?

Then again, perhaps it all was completely beyond my control, my getting MS an event as random as the computer generated numbers on a lottery ticket. Pinball or pincushion? Either way, I'll not be dancing any time soon...

Beguiling Baghdad: War, Carnage, and... Stem Cell Therapy?

Well, here's a reason to go to Baghdad, even if you aren't employed by Halliburton or the United States military. If you could manage to avoid the sectarian violence, suicide bombers, and improvised explosive devices, you might just be able to get stem cell therapy for your Multiple Sclerosis...

According to this article in "Stars and Stripes", a doctor in Baghdad is performing stem cell therapy on Multiple Sclerosis patients, with some success. He's using patients' own stem cells, derived from their bone marrow, and injected back into their spinal columns. It sounds like the procedure being used is fairly crude, but if even this primitive procedure is resulting in some benefit to the patients receiving it (and that's far from proven), then more sophisticated procedures would certainly seem to hold great promise.

I feel like I should be able to come up with some kind of war-torn witticism here, or it least a good falafel quip, but nothing seems to be coming. I invite witty readers to submit something in the comments section...

Stem cells in Baghdad? What's next, therapeutic cloning in Kabul?

It's All about the Money, Honey......

This is just the kind of thing that drives me absolutely crazy.

Here's an article (from Forbes magazine, no less) that talks about a root that is used in traditional Chinese medicine that has been shown to have very specific immunosuppressive properties, which seem to make it an ideal candidate to be developed into a drug to combat autoimmune diseases. Unlike the immunosuppressive drugs that are currently on the market, this compound (derived from the hydrangea root) targets very specific cells within the immune system, leaving the rest of that highly complex system intact. This would apparently greatly reduce the risk of serious infections and other potentially deadly side effects which are seen in many of the immunosuppressive and immunomodulating therapies that are currently marketed as MS drugs.

Sounds great, right? So, what's the problem? Well, as the article states, "Because the compound is now in the public domain, the pharmaceutical industry has not shown interest in further developing it therapeutically, researchers said".

That pretty much sums up the warped state of the medical research model in the United States. Over 70% of all medical research is funded by pharmaceutical companies, whose primary motivation in funding such research is to develop profit-making drugs. Nevermind that this compound might prove to be more effective than the outrageously expensive and sometimes highly toxic therapies currently on the market. The fact that the compound holds no profit potential means that it is most likely DOA, as far as its ever being developed into a therapy that will reach the consumer market.

Of course, we could take matters into our own hands and just try taking hydrangea root capsules, but at what dosage? How will it interact with the other drugs that many MS patients commonly take? Also, will unrefined hydrangea root have the same effect as the compound discussed in the article? There's a good chance these questions will never be answered, because Tysabri gets charged at nearly $4000 per monthly dose, the interferons go for about $1500 per month, Rituxan costs about $20,000 for a six-month dose, and a bottle of hydrangea root capsules sells for $3.75.

Aargh...

Multiple Sclerosis, The Devil In My Details...

Sometimes, getting what you always wanted isn't all it's cracked up to be.

When I was in my early 20s, I was loudly committed to living a bohemian existence. I was the lead singer of a local punk rock band, and grudgingly worked just enough hours in my part-time "day job" to about cover rent, food, booze, and cigarettes. I kept the hours of Dracula. Most nights would find me playing pool in some divey bar, and I never arose before the crack of noon. As old jazzmen used to say, I lived like I didn't know that there were two 10 o'clocks in one day...

I swore to all who would listen that I would never, never, NEVER join "mainstream" society. I would live my life entirely as part of the subculture, divorced from the world of 9-to-5 jobs, American Pie, and social convention. I vowed I would never capitulate, and that I would be steadfast in following my path, never allowing myself to be enticed by the glittering goodies that conventional society would seductively dangle to get me started down the slippery slope towards normalcy, like a corner dealer offering up a free rock of crack.

My mom would yell that I acted as if the universe owed me a living, and though I reflexively snarled back at her, deep down I knew she was right. I was sure the fates had something special in store for me. I simply would not entertain the thought that I was destined for the drudgery of the everyday. If my being a rock star wasn't in the offing, well then, I'd make it by writing, or through some other as yet unrevealed stroke of providence.

If a fortune teller had told me back then that in 20 years I wouldn't have to work, that I'd follow no schedule but my own, that my words would be read by countless strangers, and that I'd have a beautiful wife and an apartment in a New York City high-rise, I would have been beside myself with joy. Vindication! My dreams would be fulfilled! I would indeed live the life to which I somehow knew I was born.

As it turns out, those predictions did come true, but through twisted circumstances I never could have anticipated.

As time went by, I found no overnight success, and the inevitable realities of adulthood started taking their toll. The band broke up, student loans and other debts came due, and life in the urban underground finally started to lose its grungy appeal.

I took my first step down that dreaded slippery slope.

At the age of 27, I took a job as a video production assistant with a local cable company (I'd somehow earned a degree in film despite my rockstar fantasies). It was the first full-time job I'd ever held. The salary was paltry, but I did well at the job, and soon got promoted. I started dating women who expected more than cheap beer and raw emotion. I allowed myself little luxuries, which grew into bigger luxuries, and soon I just couldn't live without my convertible two-seat sports car and my antique wristwatch collection.

The job at the cable company gave way to a more prominent spot at a marketing firm, and that to a position in the corporate communications department of an international conglomerate. Though the spark of that willful 24-year-old still smoldered within, it wouldn't have recognized the face staring back at me in the mirror. In times of introspection there were always moments of self reproach, but these could be papered over easily enough with the purchase of another 65-year-old watch, or lost in a bottle of good wine. I had wandered far from the path I once thought I was meant to follow, and that path now seemed lost to me forever, the road not taken, the life not lived.

And then came Multiple Sclerosis, a wrecking ball smashing through the edifice of my life, leaving what had once seemed secure a crumbled, smoldering heap. The disease rendered my right arm and leg spastic and weak, and instead of sports cars I now drive a wheelchair. The career that fueled my venture into the mainstream was extinguished, and in place of the income it once provided, there are now monthly deposits courtesy of long-term disability insurance.

Yet, in so many ways, I’ve somehow gotten just what I had wished for all those years ago. My finances are no longer contingent on employment, and indeed, given my present circumstances, they do seem heaven sent. Once again I am a stranger to the morning, and there's no denying that I keep the hours of a novelist (as I sit here writing this at 2:30 AM). My words have reached countless strangers, though not the masses I once imagined, but instead a select audience whose appreciation has humbled me. I am free to live entirely unbound by social convention, whose limitations have been replaced by those imposed by the ravages of a progressive disabling disease and the good common sense of my wife. If I had actually received that thrilling prophecy 20 years ago, it would have been right on the money.

Like a rube wishing on Aladdin's lamp, I've seen my deepest desires fulfilled, but at a diabolical cost. And just like that rube, my most important wish appears to be one too many. It doesn't look like my MS is going to magically disappear any time soon. The devil, my friends, is in the details...

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...