Monday, November 30, 2009

CCSVI (the Vascular Theory of MS): Separating Fact from Fiction

Veins of the head and neck.

Since the airing of a Canadian television newsmagazine piece on CCSVI, there has been a veritable frenzy on Internet chat rooms and bulletin boards regarding this radical new theory. Unfortunately, the tsunami of information that is being bandied about is often misleading and sometimes just plain wrong. Based on scant knowledge, many are making extraordinary claims regarding the theory and the treatment options it presents, most of them based on little actual fact.

For those unfamiliar with CCSVI (chronic cerebrospinal venous insufficiency), I've made two previous posts about it, which you can find here and here. I've been fastidiously following the development of the theory and the treatments being used as a result of it for at least ten months now. Though I'm far from the be-all and end-all of CCSVI information, I do feel qualified to make some intelligent observations about it.

For readers unacquainted with CCSVI, the theory basically states that narrowing in the veins that drain the central nervous system (CNS) leads to an abnormal flow of blood through the CNS, which damages nerve tissue via several different mechanisms, and leads to the lesions and immune responses that are the hallmarks of Multiple Sclerosis. First proposed by an Italian doctor, Dr. Paolo Zamboni, whose wife was stricken with MS, the theory has won over several fervent supporters. Dr. Zamboni is treating MS patients with a modified balloon angioplasty procedure he calls "The Liberation Procedure", and another physician at Stanford University, Dr. Michael Dake, is opening up the blocked veins of MS patients using stents. There is also a doctor in Poland, Dr. Marian Simka, who appears to be using a combination of these two methodologies. As knowledge of the theory has spread, many harsh critics have quite expectantly begun to ring in. I'll attempt here to cut through the noise, and present the facts as I know them, along with some commentary.

To begin with, let me state that although I remain somewhat skeptical, I'm a cautious believer in the concepts put forth by the CCSVI theory. It is certainly my hope that the theory bears fruit, as it will offer MS patients a myriad of new options to treat the disease, and will lead research scientists in entirely new directions as they investigate the many aspects of Multiple Sclerosis. Hopefully, it will help bring about a rethinking of the autoimmune theory of MS, which states that, for reasons unknown, the immune system goes bonkers and starts attacking the body's own cells. Quite frankly, we've been fed that line of bullshit for far too long. If the CCSVI theory starts gaining significant traction, expect a withering storm of criticism to come from some mainstream neurologic circles, as well as from the pharmaceutical industry, which stands to lose untold billions in the sales of drugs designed to suppress the immune system.

Dr. Zamboni's research began with his imaging the vascular systems of MS patients, sufferers of other neurologic diseases, and healthy subjects. He reports that he found signs of vascular abnormalities in almost 100% of the MS patients he studied, but none in either the patients with other neurologic diseases, or the healthy subjects. On its face, this would seem to be very compelling evidence. However, as my doctors at the National Institutes of Health (NIH) have pointedly explained, this claim throws up some big red flags. Because MS is a notoriously hard disease to diagnose, and there are many diseases that mimic MS, in any large population of diagnosed MS patients, there will be a significant segment that have in fact been misdiagnosed. Therefore, finding 100% of any trait among a large population of MS patients is practically impossible. As a matter of fact, the way I first became involved with the NIH was as part of a study being used to identify patients that the National Institutes of Health could be certain actually suffer from MS, because misdiagnosed patients were skewing the results of many of the MS studies they had undertaken. The NIH is trying to identify a pool of patients they can be confident actually have MS, for use in future studies. This is how the NIH ascertained that it's very likely I do not have MS.

Still, the Zamboni findings appear to be compelling. Before they can be accepted as scientific fact, though, they must be replicated by independent researchers, and so far, no such evidence has been presented. There are several different research groups currently putting together studies of CCSVI, and a large imaging study is already ongoing at the University of Buffalo, so we should have either independent verification or refutation of the theory sometime within the next 6 to 12 months. Before we get these independent reports, however, it is extremely premature to state anything with certainty about the theory.

In my mind, CCSVI could explain several of the mysteries surrounding MS, but fails to explain many others. It's one of the first theories to adequately explain the formation of lesions and the immune response that are the calling cards of MS. It also explains findings such as those that tie cigarette smoking to an increased incidence of MS and a quicker progression of the disease. Since smoking is known to exacerbate vascular issues, if MS is in fact a vascular disease, it stands to reason that smoking would have a considerable negative effect on it.

On the other hand, the theory does not address what we know about the geographic distribution of MS, the male-female ratio that is well known to exist in MS, the existence of "MS clusters" (which would seem to point to an infectious cause), or the unmistakable link between MS and Epstein-Barr virus (100% of MS patients are infected with EBV. I know, many of you reading this have never had Mono, but the vast majority of people infected with EBV have no idea that they carry the virus. It can often be asymptomatic, or present as a bad cold or flu).

Having said that, MS is an extremely heterogeneous disease, and it may be that CCSVI is THE answer for a subset of MS patients, but may play only a partial role, or no role whatsoever in others diagnosed with the Multiple Sclerosis.

As for the surgical interventions now being used on patients whose imaging (via MRV and/or Doppler imaging studies) indicates that they have venous abnormalities related to the CNS, there are controversies surrounding these, as well. The problems stem from the fact that the procedures being used were all developed for use in clearing out the obstructed arteries of cardiac patients. Remember, CCSVI is concerned exclusively with veins.

There are major differences between arteries and veins, both in form and function. Arteries are designed to facilitate the outflow of blood from the heart to the various organs and regions of the body. They must be able to withstand the tremendous internal blood flow pressures generated by the beating heart, and thus their walls are stiff and resistant to tears and breaks. Veins, on the other hand, function to return deoxygenated blood to the lungs and heart. They are designed to be flexible and pliant, and their walls are much thinner and more prone to tearing than the walls of arteries. Arteries grow narrower in the direction of blood flow, while the opposite is true of veins, which grow wider as they return blood to the cardiopulmonary system. Therefore, a stent that gets loose in an artery is typically only pushed deeper into that artery. A stent that gets loose in a vein generally has a clear path to the heart.

In self-reported results, Dr. Zamboni's balloon angioplasty Liberation Procedure appears to be quite effective in reducing relapse rates and disease severity. Unfortunately, as many as 50% of the patients treated suffer restenosis of the veins opened by the Liberation Procedure, and thus require multiple interventions. As with any surgery, there is risk involved, and that risk is multiplied each time the intervention must be repeated. Furthermore, stenosis that is found in problematic areas, such as high in the jugulars, is not treatable by balloon angioplasty.

The surgery being attempted at Stanford University is much more aggressive, and places stents at the stenosed areas of blockage. Stenting has very rarely been tried in veins, and much less so in veins associated with the brain and spinal cord; the stents used have been almost exclusively designed for use in arteries. So far, slightly over 60 patients have been treated with this procedure, and there have been some serious complications reported. Despite the fact that I have a significant stenosis in my left upper internal jugular, both the doctors at the National Institutes of Health and my primary neurologist have repeatedly and adamantly warned me against undergoing this procedure, citing the possibilities of brainstem hemorrhages, stent migration (which would almost inevitably lead to stents finding their way into the heart), and the ever present danger of bleeding and blood clots. Although the majority of the patients that have undergone this procedure report positive results, a minority have had a difficult time recovering from surgery, and have reported nerve pain and nerve damage. There has been one near calamity associated with the surgery, as one patient required emergency open-heart surgery to retrieve a stent that had become dislodged in his jugular and migrated to his heart. (Update: as of 12/08/09, CCSVI surgical procedures at Stanford have been halted, pending the start of a clinical trial, scheduled to begin in the first quarter of 2010.)

In short, the research surrounding CCSVI appears to be very promising. Until this research is replicated by independent organizations, no real conclusions can be drawn. There have been many other promising leads in the history of MS research that have eventually led to dead ends. I'm hopeful that CCSVI will not be one of them, and instead will lead to a seismic shift in our understanding of not only MS, but other so-called autoimmune diseases as well. I cannot make any such statement, however, until the research is verified by multiple sources. As for the surgical procedures now being offered to treat stenosed veins, they must be characterized as experimental, and as such, carry with them a sizable degree of risk, more so with the stenting procedure than with balloon angioplasty. If CCSVI theory turns in to CCSVI fact, these surgical procedures will in time be refined, and the risk in undergoing them will be diminished.

As exciting as Dr. Zamboni's research is, I think it's important that the MS community as a whole steps back and takes a breath, and waits to see what further research bears out. I understand how hard this can be with a progressive neurologic disorder breathing down your neck. Believe me, I'm nearing the point of desperation myself, but in situations like these, we cannot let hope and emotion cloud our actions and understanding of the issues. These are potentially life and death matters, and need to be approached with clarity of mind and a complete grasp of the complicated issues being presented.

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Saturday, November 28, 2009

Drumsticks and Stuffing and Big Screen TVs

'Image via Wikipedia

For those of us here in The States, this past Thursday was Thanksgiving. Although it's always been one of my favorite holidays, like everything else in America, Thanksgiving lately seems to have become supersized, and has been transformed into little more than a homage to gluttony. To put it mildly, turkeys aren't the only things getting stuffed on the last Thursday in November.

To advertisers and marketers, Thanksgiving has become the starting whistle to the holiday shopping frenzy, which starts the very day after with "Black Friday", an event that has created a new holiday tradition: breathless news reports of crazed consumers lining up before dawn, trampling over each other's overstuffed backsides in a frenzied scramble to get their grubby mitts on discounted 50 inch flat screen TVs.

There was an interesting piece that ran in the New York Times earlier this week, which pointed out that through much of this nation's early history, the Thanksgiving feast was preceded by a Thanksgiving fast. People would deprive themselves for a day or two, and follow-up that deprivation with a huge feast. The Taoist in me loves that notion, it seems to me to be in keeping with the Yin and Yang of things. There can be no day without night, no peaks without valleys, no happy without sad. Why not no feast without fast? As a society, but also as individuals, we seem to have lost sight of the double-edged nature of reality. We are all for the "gain", but want nothing much to do with the "pain". It's all about the easy fix, but for those of us dealing with chronic illness, there is no such thing.

Despite my best efforts at staying in the moment and keeping myself centered, I had a hard time mustering up much to be thankful for this year. My MS continues to progress, well, if it even is MS, and everyday tasks are getting more and more difficult. On top of that, my recent cataract surgery has left my eyes all wonky, and I think I'm going to need further surgery to correct the mistakes of the initial surgeries. In the parlance of World War II, it's all just a big SNAFU (Situation Normal, All Fucked Up). The eye thing has been especially frustrating, as I'd convinced myself that taking care of the cataracts would be the first step on some kind of road to recovery. Well, that first step has been a doozy...

As I contemplated my situation, I thought back in the spring of 2006. At that time I was still working, and didn't even need a cane or ankle brace to walk. I certainly was no Fred Astaire, but I could at least limp for a half block or so, which now seems incredible, given my current state of affairs. I'd recently undergone sinus surgery, which sent my neurologic crap into overdrive. Even though it was a minor procedure, I had a really hard time getting over the surgery, and my neurologist decided to pull out all the stops in an attempt to slow down the progression of my disability. He ordered a 10 day course of IV steroids, and had me spend a week at the Helen Hayes Rehabilitation Hospital for some intense physical and occupational therapy.

The steroids had a dramatic effect, and although those effects were relatively short-lived, I did temporarily recover function that had been lost to me for the better part of a year. Unfortunately, the massive dose of steroids led to my developing avascular necrosis, which I've complained about in other posts, so I'll refrain from doing so again here. My time at the Helen Hayes Hospital was life-changing, though, in ways that went far beyond the exercises and techniques that I was guided through by the hospital's crack staff of nurses and therapists, angels all. What really struck me, and has stayed with me to this day, were my fellow patients.

The people I met at Helen Hayes were of all different ages, races, and educational and economic backgrounds. I met one man in his early 50s, who had been a top corporate lawyer. He had suffered three strokes, and was trying to relearn how to do the simplest of things, to use a knife and fork, to turn the pages of a book. Another patient was a woman in her 40s, a biker chick that had "kissed the pavement" (her words), and had been in a coma for more than three months. Her progress had been amazing, and when I met her she was just about back to normal. Then there was Steve, a kid in his 20s, who every day told me a different story about how he had suffered his head injury. On Monday it was a boating accident, on Tuesday a fight, on Wednesday he told me he fell off a wall. I asked a nurse about him, and she told me he had in fact been in a car accident, and as a result of his injuries he had completely lost his short-term memory. Each morning he made up a new reality for himself. He had to be led back to his room after each therapy session, as he couldn't remember the way.

Though we were all very different, and were at the facility for very different reasons, all of us patients had one thing in common. None of us had ever expected, had ever had the slightest notion, that we would someday end up in a rehab hospital. At some point in the not-too-distant past, we had all been simply living our lives, consumed by the details of the day-to-day, concerned and sometimes overwhelmed by problems that now seem almost laughably trivial, taking the fragility of what seemed mundane completely for granted. But an errant blood clot in the brain, a slippery stretch of pavement, or a tiny patch of sick nerve cells were all that it took to completely demolish everything that used to be. Given half a chance, each of us would have eagerly leapt at the opportunity to exchange the problems from the worst of our "well" days for the ones we were now facing.

Funny thing is, three and half years later, I would now leap at the opportunity to be in the same condition that seemed so debilitating to me back then. In retrospect, even what once seemed like a curse can look like a blessing, and if you've woken up on this side of the grass today, that alone is reason to be thankful. If you are healthy, or only lightly touched by disease, rejoice in your good fortune, regardless of whether your present circumstances are what you wanted or expected. You have within you the infinite power to change those circumstances. If you're dealing with considerable disability, try to find the determination to focus on the here and now and all that you still can do, rather than dwell on what you've lost. Easier said than done, I know, but that which we take for granted today might seem quite precious tomorrow.

And everybody, well or unwell, happy, sad, or indifferent, embrace all who you love and who love you back. Tell them how much they mean to you, if not in words then in actions, your family, your friends, your dogs and cats, even those who might not be aware of your affections for them. Tomorrow is an iffy proposition, yesterday is an illusion, today is the culmination of all you have been and the beginning of all you ever will be. In the now there is the inestimable power of the universe, there for you to use or risk of losing. Celebrate the ordinary, celebrate the extraordinary, celebrate everything in between, because in the vastness of time, this short life, this briefest of ticks on the universal clock, is all you've got, so ride this sucker hard, and bring it back to the barn wet (how's that for some cowboy talk from a city boy?). Go fast, my friends, even if your fast is slow.

Happy Thanksgiving, everybody. And please, try not to get crushed to death at your local Best Buy.

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Saturday, November 21, 2009

Video: CCSVI and The Liberation Treatment- A Whole New Approach to MS

Blood circulation:  Red = oxygenated  Blue = d...Image via Wikipedia

Canadian television network CTV tonight aired a 20 minute news report on Dr. Paolo Zamboni and the "Liberation Procedure", a surgical intervention he uses to clear the blocked veins he's consistently found in MS patients. Zamboni has come up with a radical new theory regarding the cause of MS, called CCSVI (Chronic Cerebrospinal Venous Insufficiency), which states that MS is caused, in whole or in part, by the abnormal narrowing of the veins that drain blood from the central nervous system (the jugular and azygous veins). I've previously written about CCSVI in two posts, which contain links to pertinent research and other information, here and here.

The CCSVI theory hypothesizes that the blockages found can cause blood to flow back into the CNS, depositing iron in the brain and spine, which leads to nerve cell damage and death. The body responds to this damage with the immune response that has thus far been the focus of most modern MS research.

The CCSVI theory doesn't address some of the distinctive features of the MS population (geographic distribution, male: female ratios, the existence of MS "clusters", etc.) but could possibly explain much of what has been observed about the disease. Furthermore, the vascular abnormalities seen in CCSVI can be corrected surgically, potentially giving people with MS the hope of a safe and effective treatment.

Please keep in mind that despite the enthusiasm that this theory has generated among MS patients, there is still much to be proven. This can only be done through studies that confirm Dr. Zamboni's findings, some of which are already underway.

The link below will take you to the CTV site that hosts the video news report, broken into two parts. Also included on the page are additional segments featuring Dr. Zamboni being interviewed on various aspects of his findings and results. For MS patients, this is must-see TV...

CTV News The Liberation Treatment: A whole new approach to MS

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Video News Piece on the Vascular Theory of MS (CCSVI)

Canadian Television has produced a five-minute news piece on the "vascular theory" of MS, otherwise known as CCSVI (chronic cerebrospinal venous insufficiency). This theory hypothesizes that rather than autoimmunity, the narrowing and blockages of veins that drain the central nervous system may be the actual cause of MS. If proven correct, this could fundamentally change our understanding of the disease. Better still, surgical intervention could be performed that might stop the disease in its tracks.

This theory was first proposed by a doctor in Italy, Dr. Paolo Zamboni, and his research is being followed up in several locations around the globe, including a large study now underway at the University of Buffalo.

All of this is far from proven, but the research does look intriguing. At the very least, it's prompting people to look beyond the autoimmune theory of MS, which in itself is a good thing. CTV will be airing a one-hour documentary on CCSVI this weekend, and I'll provide a link to that show when it becomes available.

Click the link below to view the video.

CTV News W5 investigates intriguing new theory about MS

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Thursday, November 19, 2009

NIH Thinks I DON'T Have MS. Wow!

National Institutes of Health

Well, after four months and a huge amount of poking and prodding, the National Institutes of Health Neuroimmunology team has decided that it's very unlikely that I have Multiple Sclerosis.

Holy shit.

Despite the fact that I've been disputing my diagnosis almost since the day I received it, and this news should be hugely validating, it's left me a little breathless, my head spinning faster than a chunky yuppie trying to lose her love handles at the local Bally's. Not exactly doing a victory dance here, and not only because I could just as soon dance as crap the Hope diamond.

Since July, I've made four visits down to Bethesda to be seen by the doctors at the NIH. During that time, I've undergone extensive testing, the results of which seem to confirm my long-held suspicions about my diagnosis. I only have one central nervous system (CNS) lesion of consequence, located at the base of my brainstem, and this lesion has not changed one bit during the eight years I've been getting regular MRIs. The lesion appears to be an old scar, and doesn't look to be "active". The very name "Multiple Sclerosis" implies more than one lesion, so right there we have a problem. Additionally, multiple tests reveal no evidence of inflammation or immune activity in my CNS, another hallmark of MS.

My test results look more like those of a patient who had suffered a damaging central nervous system "event" at some time in the past, had suffered disability at that time, and has remained stable since. In actuality, though, I've experienced a slow and steady progression of symptoms. When I first took note of the fact I was limping, 6 1/2 years ago, I could easily walk several miles, and the limp was the result of some slight weakness in my right knee, which only showed itself after a good long hike. Fast forward to today, when my right arm and leg are basically paralyzed, and I have increasing weakness and numbness on my left side as well. My progression has been continuous during this time, which is a complete disconnect from what my test results would appear to reveal.

My clinical presentation (disease history, physical neurologic exam) does resemble that of someone with PPMS, so it still could be that I have a very, very atypical form of that disease. The NIH thinks it more likely, though, that I'm suffering from some other progressive neurologic illness, of which there are more than a dozen. Unfortunately, none of them (including PPMS) currently has any treatment, and my symptoms and test results don't neatly fit into a diagnosis of any of them. I could be suffering from some new "Wheelchair Kamikaze Disease", and even though new diseases are usually named after the doctor that discovers them, if this is a new disease, I absolutely insist that it be called "Wheelchair Kamikaze Disease". Not exactly the rock star fame I was looking for in my younger days, but any port in a storm...

The other big news out of my examinations down in Bethesda is that I do have a vascular abnormality like those that are described in the CCSVI theory of MS. For those unfamiliar with this theory, which hypothesizes that MS is actually a vascular disease, I've described it in two previous posts on this blog, here and here. I believe this is must reading for anybody who has MS, as this theory could change everything we think about Multiple Sclerosis.

I had a CT venogram done several months ago, which revealed that I have a stenosis (narrowing) of my left internal jugular vein, very high up in my skull. This narrowing is directly adjacent to the central nervous system lesion on at the base of my brainstem that is causing all of my problems. Though they're far from sure, the NIH believes that this vascular abnormality could be related to my neurologic degeneration, so we're going to investigate that possibility further, through additional testing, to see if a connection can be made between blood flow problems and the damage being done to my nervous system.

There is currently a doctor in California who has done endovascular surgery on several dozen MS patients who have been shown to have stenosis, placing stents in their narrowed veins. So far the results have been encouraging, but I'm going to wait to see what the NIH and my primary treating neurologist (Dr. Big Brain) have to say on the matter. Despite the NIH results, Dr. Big Brain is not convinced that I don't have MS, and hasn't bought into the vascular theory, either. I have an appointment to see him on December 5, when we'll try to hash these things out.

File:Conrad von Soest, 'Brillenapostel' (1403).jpgOn the cataract front, I'm less than thrilled with the results of the surgery, so far. I paid quite a significant sum out-of-pocket for special lenses to be implanted into my eyes, to replace my natural lenses which had developed cataracts. I was told these implants would very likely give me near normal distance vision, but that I would still require reading glasses. To a person who's been wearing glasses to correct his nearsightedness since age 6, the promise of "near normal" distance vision sounded almost too good to be true.

Well, it was. As it stands now, these miracle lenses have overcorrected my eyes, and now the wonders of modern medicine have magically transformed my former nearsightedness into farsightedness. Abracadabra.

After the second surgery, the doctor told me to buy some drugstore reading glasses so that I could read while my eyes healed. Surprise, surprise, when I put the reading glasses on, instead of clearing up my close up vision, they improved my distance vision. In order to read, or see a computer screen, I had to buy a second pair of drugstore reading glasses, which I wear in front of the first pair in order to see the fracking screen. So, yes, as I sit here writing this, I'm wearing two pair of drugstore reading glasses. Can a guy catch a break? To top it off, the glasses that correct farsightedness are the kind that make your eyes look really big, so now I can look forward to zipping around in my wheelchair all bug eyed. Incredible that despite being half paralyzed, I'm still as vain as a homecoming queen, isn't it?

I have my next follow-up with the eye doctor on November 30, when my eyes will be healed enough to get a final prescription for glasses, but if my eyesight has not improved by then, he's going to get quite an earful. Jackass.

Okay, deep breath, time to kick into high gear some of that Zen stuff I'm always talking about. But first I think I'm just going to curse a lot, like a Tourette's patient on Red Bull. Cover your ears...

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Saturday, November 14, 2009

MRI As Art

mri6 MS patients are all too familiar with MRI images, those stark, black-and-white pictures of our brains and spinal cords that are used to diagnose and track the course of Multiple Sclerosis. I remember seeing my first set of MRIs; they were scary and indecipherable. The neurologist who went over them with me started quickly pointing out problem areas, which for the life of me I couldn't distinguish from the non-problematic ones. Reading MRIs appeared to be some kind of black art, like looking at the innards of a freshly sacrificed chicken in an effort to divine the future. I've since become pretty good at it at deciphering these images, and now find them to be almost hypnotic, a chance to take a gander at what makes me, me.

San Francisco area artist Elizabeth Jameson has taken her fascination with MRI images a step further, and has used them to create compelling works of art, using mediums such as solarplate etchings, silk paintings, textiles, mixed media pieces, and digital work. Her work is currently on display at The Commonwealth Club in San Francisco, in a show entitled "Conversations with Myself: A Brain Journey". The show will run through January 7, 2010.

Elizabeth Jameson worked as a civil rights advocacy lawyer for many years, and was stricken with MS in the early 1990s. When the disease eventually forced her to give up her profession, she turned to art as a new means of expression, and began to incorporate into her artwork the MRI images that so symbolized the disease that had forever altered her life.

"I start with these stark, intimidating pieces of dark plastic that have defined and delineated the most challenging facets of my life for the past twenty years," says Jameson, "And I attempt to transform them into something beautiful."

As a creative person who's also a bit of an MS research wonk, I find Elizabeth's work to be captivating. I also applaud the fact that she's used her creative alchemy to transform something so potentially negative into a positive of haunting beauty. As a friend once said, if life hands you a lemon, find someone you hate and squirt them in the eye with it...

Please click thumbnail for larger image:

mri1 mri2 mri3 mri4 mri5

Thursday, November 12, 2009

Thanks for Your Concern

Viktor Vasnetsov: A Knight at the Crossroads (...

Image via Wikipedia

Since my last post, I've received some heartfelt and deeply appreciated expressions of concern from several readers, both in the comments section of that post, and in private e-mails. I'm sorry it's taken me so long to respond, but I've had a bit of a hard time recovering from my recent cataract surgeries. Seems that my body just doesn't take to being poked and prodded these days, the result of my neurologic crap and some endocrine dysfunction that I'm lucky enough to have to deal with on top of it.

Anybody care to trade bodies with me? Please, no need to rush the stage, just line up single file, and take a number...

In my last post, I mentioned thinking about, and planning for, the "end game". I suppose that since such thoughts have been rattling around in my brain pan for a while now, I've forgotten how sensitive the subject can be. As a society, we tend to reflexively pull back from open discussions of death. It doesn’t make much sense, really, when you consider that our ultimate demise is the only thing that every single one of us can be sure of.

The recognition of the reality of my own mortality has gone a long way towards helping me deal with the day-to-day rigors of my disease. That may be counterintuitive, as it may seem that being aware that my incurable disease could very well progress to "unbearable" would fill me with unending dread. To be completely honest, sometimes it does. But more often, the concrete realization that my time is finite, and therefore incredibly precious, makes me determined to make the most of each day, while I am still able.

As I've said before, happiness is not a choice, but a million choices, made each and every day. I could certainly decide to curl up into a ball and not get out of bed, righteously bemoaning my fate, and no one could blame me. But that would be a waste of whatever quality time I have left, be it a single month or fifty years. Instead, I fight the impulse to implode, and mindfully make the decision to get up and make the most of it. That decision is matched by countless others in the course of a day, each one directed at avoiding misery and seeking some measure of contentment.

Today is the only today I'll ever have, and if I choose to spend it in misery, it's a wasted day. I'll never get it back. The same sentiment holds true for every living person, as long as they have not crossed into the "unbearable". Healthy or not, we are all on this earth for a finite number of days, making each of those days infinitely dear. As those days add up to weeks and months and years, the time left only becomes shorter, and thus time is a commodity that becomes more precious with each tick of the clock.

When healthy, it's easy to ignore this reality and nurture the illusion of immortality. Once given a serious diagnosis, though, that illusion crumbles, and it's up to each of us to decide what reality we will build out of those shattered illusions. I decided soon after the onset of my disease to stare this beast straight in the eyes, and every once in a while spit in its face. Some patients choose denial, and if that works for them, great. I felt the urgent need to strip this thing to its bare bones, and to see it for what it is. I have a chronic, progressive neurologic disease. Presently, there is no cure for this disease. I've gone through toxic therapies and unpleasant procedures in an attempt to stop its onslaught. I've put myself before some of the best doctors in the world. I will continue to fight this thing until I have no fight left in me.

The reality, though, is that left unchecked, eventually this son of a bitch will take me to a place that I could very well consider unbearable, and unbearable is a place that I simply will not dwell. I've had quite a ride, and though I'm not anxious to get off, if it becomes clear that the ride will soon end with my lying helpless in bed, unable to move, it will be time to leave the amusement park.

Don't worry, though, I'm not on the verge of heading for the exits, I'm just trying to deal with my disease with clarity and strength of mind. I'm not speaking out of depression, or even desperation, just from a cogent assessment of my situation and an accounting of my eventual options.

There is constant research being done attempting to conquer the disease, and new discoveries are made daily. Recently, my entire diagnosis has been called into question (now there's a teaser for a future post). I'm hopeful that I'll never approach that unpleasant fork in the road, but I'm determined to be prepared if I do.

Woody Allen once said, "More than any other time in history, mankind faces a crossroads. One path leads to despair and utter hopelessness. The other, to total extinction. Let us pray we have the wisdom to choose correctly". Though those words were meant to be sardonic, the chronic progressive patient understands the truth that they hold. The disease takes such sentiments from the realm of abstraction and places them squarely into the world of hard fact. That's neither a good or a bad thing. Like all things in life, it's really just a matter of perception.

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Tuesday, November 3, 2009

Disability Mind Games

Difícil Decisión / Hard Decision

Image by juanignaciosl via Flickr

This last week has been kind of rough. The combination of the wear and tear from my trip down to Bethesda to visit the NIH and my first cataract surgery (the second is scheduled for this morning) have pretty much knocked me on my ass. My neurologic symptoms have ramped up, the avascular necrosis in my joints has become excruciating, and I'm just plain worn out.

While it's easy to catalog all of my physical discomforts, what's harder to convey are the constant mental gymnastics that those of us who deal with chronic disabling illnesses have to perform.

Receiving a diagnosis of multiple sclerosis (or any degenerative disease) carries with it an intense emotional burden. You're left to not only cope with the your present state of disability and the knowledge that you have an incurable, progressive disease, but also with the unpleasant realities of what very well could be an increasingly disabled future.

Immediately, a newly diagnosed patient is confronted with some mindbending choices. All of the approved MS therapies carry with them some serious side effects, and in the case of some of the most effective therapies, potentially deadly ones (fatal brain infections). Thus, the newly minted MS patient is hit with a double whammy. First told they have an incurable, potentially crippling disease, then asked to go ahead and pick their poison. What a choice to be given to a person whose world has recently been rocked to its core, huh? Choose a drug that has been shown to sometimes dramatically improve the quality of life of MS patients, but carries with it the threat of a horrible brain infection, or forgo it for less effective therapies, each of which also has its share of unpleasant side effects? The pharmaceutical companies paint a decidedly rosier picture of things, but it is what it is. Not exactly like picking chocolate or vanilla.

As the disease settles in, there are dozens of less momentous mental calculations that increasing disability forces upon you to just make it through the day. As disease progression slowly whittles away at strength and dexterity, what had been simple acts become exercises in difficulty and frustration. Lounging around in bed watching TV, and your feet get cold? Well, silly, just go put on some socks! Yeah, right. My right arm and leg are useless, and avascular necrosis has put a painful limit on my range of motion. Putting on socks, when possible at all, hurts like a bitch, and watching myself struggle to complete such a formally mindless act is gut wrenching. Many times, that mental hoop just seems too uninviting to jump through, and I decide to simply live with the cold feet.

The same mental calculus repeats itself over and over throughout the day. Surfing the Internet on my desktop computer, I might get thirsty, but the kitchen is now a long and painful stumble away, and getting into the wheelchair to travel the 30 or so feet to the fridge is a disheartening pain in the ass, so instead I go dry. Besides, if I did embark on the journey to the kitchen to fix myself a beverage, thanks to neurologic bladder dysfunction, I'd have to pee (quite urgently) in 10 minutes anyway, meaning yet another struggle to get up and drag myself to the bathroom.

When I was a kid, my mom used to make me laugh when she'd see me fidgeting and doing the little boy "pee pee dance" by jokingly singing, "Hasten, Jason, get the basin... Plop, plop, get the mop". Yes, mom is quite the cutup. Now I find myself silently reciting that little ditty as I struggle to get to the loo, only these days it's not so funny. Quite often, like the delight of warm feet, the pleasures of a glass of OJ just don't seem worth it.

These kinds of considerations grow exponentially when I'm thrust into social situations either at home or (gasp!) in the outside world. I'm a social person, and love time spent with family and close friends, but the physical and mental toll of such socializing is exhausting. Entertaining people at home is infinitely easier than venturing into the outside world, but still, sometimes I'm just not up to putting my disabilities on display. I can put up a brave front and slap on my happy face, but four or five hours of suppressing a grimace when my hips bark, or pretending not to struggle when trying to eat with only one hand, or attempting to unobtrusively stumble or wheelchair my way to the bathroom before disaster strikes, exacts a physical and emotional toll. A night spent with friends most often leaves me spending the next day simply recuperating. One can't be a hermit, though, and the benefits of spending time with those dear to you usually do outweigh the negatives. Nevertheless, I'm forced to put all of these variables into the equation, and ration my time accordingly. It's as if life can only be lived in small, easily digestible portions.

This leads us then to the ultimate mental calculus, that of the end game. It's never pleasant to think about, much less talk about, but as disability progresses the reality of your own mortality becomes crystal clear. Inevitably, you begin to ponder the imponderable: just when is enough, enough?

There are those who will suffer every indignity simply to remain breathing. I am not one of them. This is perhaps fodder for another post, so I'll keep it short in this one. Suffice it to say that no one here gets out alive, and for me it's all about quality, not quantity. I've no intention to spend much time as a fully conscious mind trapped in a prison of completely useless flesh and bone. This is the ultimate calculation, then, to decide just where to draw that line in the sand.

I've spoken to other patients in much the same boat, and we've all shared similar thoughts. Some have taken the actual steps necessary to facilitate their exit, laying in the necessary supplies. I've not yet reached that juncture, but I do have a clear picture of my point of no return. I fervently hope that I never get there, but simply going through this mental exercise has changed me in fundamental ways. This, perhaps, is the deepest and most intractable psychic wound progressive illness inflicts. I do believe that it's an insult that can never heal...

(Please bear with me while I recover from my second cataract surgery. I'm not sure how long my vision will keep me from the computer. I'm not expecting too long an absence, though. You'll not be rid of me that easily...)

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