Wednesday, January 22, 2014

A Certain Kind of Crazy

When you think of mental illness, is this what...

(Photo credit: JenXer)
One of the unexpected upsides of my being stricken with MS (or whatever the hell it is that I have) is that dealing with the disease has somehow cured me of many of the neuroses that dogged me when I was physically healthy.

Back then I was quite the neurotic, my psychological quirks and bugaboos manifesting themselves in manners great and small. Even as a child I was a world-class hypochondriac, constantly checking the whites of my eyes for signs of jaundice, always hyper vigilant for any suspicious lumps or bruising, once even convincing myself that I’d contracted leprosy – this after reading about the disease in the novel Papillion – and driving my mom so bonkers with my self-diagnosis that she finally took me to the pediatrician, who laughed out loud when I dramatically announced my dire conclusion. By the time I reached my teenage years, I considered myself lucky to have survived imaginary bouts with leukemia, stomach cancer, and several brain tumors. “Mom”, the 9 or 10-year-old me would plaintively wail on a regular basis, “I think I have a brain tumor!” After a while, her reply became well worn, but still comforting. “First you need a brain…” Yes, Mom was (and is) quite the cutup, and I was, of course, quite the delightful child.

Hypochondria was but one facet of the flea circus that bounced around inside my brain. I was riddled with all kinds of anxieties, ranging from the sublime to the ridiculous. Well into adulthood, the very thought of eating a big plate of pasta in a public place was enough to bring on a full-blown anxiety attack. Why? Damned if I know. Doesn’t everybody harbor a deep-seated fear of linguine in the dark recesses of their soul?

When I became sick for real and my disease started progressing, though, most of my neuroses abruptly faded and went “poof”. Suddenly I had something all too material to occupy my overactive synapses, and the starkly intractable nature of my illness served as a lens to focus my scattered eccentricities. Much of my previously misplaced psychic energies went towards diving headlong into learning as much as I could about the disease, and the rest were put in their place by my newfound sense of perspective, a toughened philosophy provided by the very tangible prospect of ever creeping paralysis, which cast a telling light on the relative insignificance of most of my old concerns, real or imagined.

Lately, though, I’ve started to recognize in myself a new set of psychological complexes, much quieter than my old kinks, but also much more insidious, a certain kind of crazy borne by the pressures of living a life filled with the stress of ever advancing physical ruin. Patients with relapsing remitting disease are undoubtedly faced with their own form of psychological perdition, never knowing when the disease might strike and what damage will be left behind when it does, a perpetual uncertainty that must engender its own particular form of dread. Those like myself, dealing with slow but never ceasing progressive disability, forced to watch the malady creep inch by inch, limb by limb, ability by ability, insatiable in its ugly war of attrition, must steel themselves against the psychic cost of watching oneself slowly disappear.

Given the undeniably awful realities of the situation, it’s a testament to the human spirit that we all aren’t stark raving lunatics, howling at the moon and cursing at ghosts. But just as the disease itself takes a physical toll, I suppose there must inevitably be an emotional price to be paid as well. Yes, I’m more psychologically stable now than I was before being stricken, definitely not prone to the fits of anxiety and freeform angst of old. Instead, of late I recognize in myself a sort of shrinking back from the world, a reticence to integrate with the land of “them”, the healthy and their buzzing realm of perpetual effortless motion, the narrative of their lives blessedly unbroken by the cutting blow of disease.

Despite my undying affection for friends and family, I find myself more and more inclined to avoid contact, phone calls left unreturned and invitations clumsily declined. Surely, some of this can be chalked up to the physical realities of my condition; I’m quite often literally too sick and tired to mount much of an effort. But the roots of my self-imposed solitude go beyond the physical, for as much as I can and do still enjoy the company of others, their very being and the untruncated lives they live serve to shine a spotlight on just how much I’ve lost, on the ever mounting toll this greedy beast has exacted. Being out in the world, by myself or with companions, is a double-edged sword. There is joy and wonder in droves out there, for sure, pleasures I can still appreciate and share, but my increasingly limited physical ability to partake of many of those joys and wonders brings with it an ache that burrows deep. The breathtaking ease with which the healthy dance on the stage of the world tantalizes and taunts, their antics a potential source of delight but increasingly one fraught with heart rending distress as well.

I find myself, despite my best efforts and better judgment, increasingly getting lost in the past, wishing that I could turn back the clock several decades for a second shot at it all. Given the time and opportunity to pick apart my old life as one might dissect the intricacies of a piece of enigmatic prose, the many mistakes made, the missed opportunities, the undeniable missteps of my long gone existence stand out in stark relief. Might a different choice here or there have put me on a path that would not have led to my being afflicted with this goddamned scourge? Live in the moment, I tell myself, stay in the now, embrace with gratitude all the good you still have, but the siren song of days long gone, faded times once so pregnant with possibility, penetrates my defenses like a laser guided bomb.

I think this troubling state of mind is symptomatic of an as yet unnamed psychological condition, a correlate to Post Traumatic Stress Disorder, commonly referred to as PTSD, the debilitating mental disorder that afflicts many who have experienced intense periods of stress, such as warriors, first responders, or victims of violent crime. Those of us with chronic debilitating illness don’t get to the point of being "post-traumatic", since our trauma is incessant and ongoing. So I propose a new psychological classification, Never-Ending Traumatic Stress Disorder, or NTSD. There's no doubt that along with the body being caught in the vise of an unrelenting foe, the mind is trapped as well. How can there not be a psychological toll exacted after being subjected to physical insult after physical insult, indignity after indignity, the slowly maddening drip, drip, drip of accumulating disability? I’ve watched helplessly as the disease has hacked away at not only me but many of my MS friends as well, my heart breaking for their losses as well as my own. Suffice it to say, I am not amused.

But then again, at times I am amused. Though admitting it might be considered a heresy, there are aspects of this experience that have been profoundly positive. Is it a sacrilege to say that I love not working? My forced “retirement” has given me a freedom I haven’t tasted since early childhood, a total liberty to do what I want, when I want, and how I want, albeit within the confines of my increasingly limited physicality. It’s allowed me free reign to explore interests and predilections that had too often been sacrificed to the workaday world. My days can be filled with music and movies, writing and photography, daydreams and online investigations for as long as my body allows. I can sleep when I’m tired, eat when I’m hungry, and, through the magic of long term disability insurance, get paid for it all.

Is it too taboo for me to admit that driving my wheelchair through New York City is a total blast? Whizzing past pedestrians, scooting across wide boulevards and narrow streets, the chair has proven to be the best mode of urban transportation I’ve ever experienced. Truth be told, if miraculously cured tomorrow I’d be tempted to keep the damn thing, as it makes getting from point A to point B in this congested metropolis not only efficient but fun, and sometimes even an adventure. Just today, in order to get to a doctor’s appointment, I took the contraption out in the middle of a snowstorm, despite the concerns of loved ones and even the doctor’s staff, who called to warn me of the treacherous conditions. Yes, the 10 block journey was a little bit hairy, especially on my return trip, as the chair skidded and swerved through the slippery white stuff accumulating on the messy city streets, but it was as close as I’ve come in years to replicating that old feeling of driving sports cars that I so loved in days gone by. It was good to have that adrenaline pumping once again, reawakening senses that I was afraid had atrophied along with my wasted right arm.

Through the wonders of the Internet, on MS forums and this blog in particular, I’ve met some wonderful people, both online and in person. I’ve learned more about compassion and empathy, community and comradeship, and the power of kindness and understanding than I ever would have had I not been walloped by our shared enemy. In fact, given the hard-fought wisdom gained and the new perspective achieved, if a cure were to suddenly be forthcoming this experience, as harrowing as it has been, might just qualify as a net positive.

But let’s be real, though advances have been made, MS, particularly its progressive form, continues to have the medical wizards flummoxed, the cause of all forms of the disease still cloaked in mystery. There is reason for hope, as research is beginning to offer up tantalizing clues, and the promise of cutting-edge therapies such as stem cells hangs on the horizon. Folks with RRMS now have treatments that can dramatically improve their quality of life, and might, just might, slow down the progression of the disease. Still, despite whatever positives can be snatched from the muck of the disease, the psychological grind of days imbued with illness and all its trappings must inevitably exact a price. Perhaps by simply recognizing this certain kind of crazy, this Never-Ending Stress Disorder, one can take the first steps in learning to, if not vanquish it, then at least keep it from getting the upper hand.

He says, while howling at the moon and cursing at ghosts…

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Tuesday, January 7, 2014

Bits and Pieces: 1,000,000 Page Views Edition (Also: Lemtrada, Tysabri Risk/Reward, and Asinine Research)


Eyeballs (Photo credit: Skrewtape)

(If you have received this via email, the following post contains a slideshow and a video, which can be viewed on the Wheelchair Kamikaze website. Please (click here) to view the multimedia content on your web browser.)

Gadzooks! Zounds! Great Gooble Gobble! Late last week Wheelchair Kamikaze received its one millionth page view. 1,000,000! I’m absolutely gob smacked, even though I’m pretty sure about half a million of those page views can be directly attributed to my mother.

In the nomenclature of the Internet, each page view is just what it sounds like, an instance when somebody finds their way to a specific website through a search engine or link and gives it a peek. So, in the four years and 11 months since its inception, my modest little abode on the Internet has been looked at by folks 1,000,000 times, a figure which truly boggles my mind. People from all over the world have visited this place; the stats provided to me by Google show that in the last month alone Wheelchair Kamikaze has been frequented by people in (in alphabetical order): Australia, Belgium, Canada, China, Costa Rica, The Czech Republic, France, Germany, Iraq, Israel, Luxembourg, Malaysia, Mexico, The Netherlands, New Zealand, Norway, Poland, Saudi Arabia, Serbia, Spain, Sweden, Switzerland, Ukraine, United Arab Emirates, United Kingdom, The United States, and Venezuela. Holy crap!

In all honesty, I never expected more than a couple of dozen people to ever look at this thing, as when I started Wheelchair Kamikaze I wasn’t even all that sure of what a blog actually was. I’d been quite active on several online MS forums for a number of years, and during that time several fellow forum members intermittently urged me to start writing a blog, a notion to which I wasn’t all that favorable. I’d never really ventured into the “blogosphere”, and my conception of what a blog could be was fairly limited. In my mind a blog was pretty much just a sort of online diary, and I really didn’t think that what I did or thought would be of interest to anybody outside of the small sphere of human beings who actually knew me.

It wasn’t until my sorry ass landed in a wheelchair, and, at my wife’s urging, I attached a camera to that wheelchair and made a few videos of my wheelchair rides through Manhattan – which friends and family found amusing – that the idea of staking out my own virtual homestead took hold. Okay, I thought, a blog could provide me a place to house the videos and photos I took from my wheelchair, and maybe the occasional scribble or two, in a spot that would be easily accessible to the relatively few people who knew I existed. Never in my wildest dreams did I imagine that this site would provide a conduit through which a part of me could reach out and touch people all over the world, and that in turn these virtual connections would enrich my life in ways that are literally beyond words.

Wheelchair Kamikaze has provided a kind of method to the madness of my being stricken ill, and has many a time proven to be a lifeboat of sorts, helping me keep my head above the churning, tempestuous psychological waters of dealing with my chronic progressively disabling disease. For that I am more than grateful, and to all of the wonderful people who have contributed to those 1,000,000 page views I offer my most humble gratitude, which hardly seems sufficient given the remarkably positive impact creating this blog and interacting with those who view it has had on my life. It may be overstating it to say that Wheelchair Kamikaze has been my salvation, but it wouldn’t be overstating it by much. So, thank you, thank you, thank you.

Okay, with that bit of mushiness done with, let’s get to the business at hand, a rundown of various pieces of MS related news that have garnered my attention over the last few months or so. As usual, these pieces range from the sublime to the ridiculous, and I hope you’ll find them pertinent, useful, interesting, and/or amusing. On with the show…

♦ A new MS drug called Lemtrada has been approved for use in Canada (click here), Australia (click here), and the European Union (click here), but, surprisingly, not here in the United States, where the FDA rejected Lemtrada’s application for approval (click here). The FDA’s rejection comes as something of a shock, as it was widely expected that Lemtrada would receive the FDA’s authorization, despite the problematic side effect profile of the drug.

Lemtrada isn’t actually a new drug; in a previous incarnation, when it was called Campath, it had been used successfully to treat leukemia and lymphoma since 2001. The drug is a monoclonal antibody, a member of the same family of drugs as Tysabri, and works by dramatically depopulating immune system cells in treated patients. Lemtrada is so effective in wiping out its immune cell targets that it in effect prompts the body to “reboot” the immune system, much the same way that certain stem cell therapies attempt to do. The idea is relatively straightforward – wipe clean a person’s immune system, in the hopes that when that immune system is reconstituted it will no longer have an appetite for the patient’s own central nervous system cells. This relatively straightforward concept has proven somewhat tricky to pull off in practice, but Lemtrada does seem to accomplish this feat over an extended period of time.

When used to treat MS, Lemtrada is given intravenously in five day courses two or three times over a 12 month period. After this initial one-year period of dosing, clinical trials have shown Lemtrada to be remarkably effective when given to relapsing remitting patients with active disease. One study (click here) showed that five years after treatment 65 percent of such patients were free of clinically active disease, 72 percent were relapse free, and 87 percent of Lemtrada treated subjects were free of sustained accumulation of disability. In other words, five years after treatment, well over half of the patients given Lemtrada showed virtually no signs of multiple sclerosis activity – they were, for all intents and purposes, MS free.

What then, is the problem? Unfortunately, Lemtrada’s effectiveness comes at a price. Approximately 30 percent of Lemtrada treated patients develop autoimmune thyroid disease, which, though not to be pooh-poohed, can be effectively treated using conventional therapies. More disturbingly, some patients develop an autoimmune blood disease called immune thrombocytopenia (ITP), which, if not caught in time, is often fatal. Patients can be effectively monitored for ITP, but the fact that Lemtrada leaves patients susceptible to the potentially deadly disease is problematic, to say the least.

In those places where it has been approved for use, Lemtrada poses RRMS patients quite a dilemma. Is the prospect of being disease-free five years after treatment worth the risks associated with autoimmune thyroid disease and ITP? Quite the conundrum, but I would think that at least some folks being ravaged by highly active MS, experiencing relapse after crippling relapse, would certainly be willing to take the risk. As we’ve seen with Tysabri, patients can be quite tolerant of risk when a drug dramatically increases their quality of life. It will certainly be interesting to watch as the Lemtrada saga plays out in the regions that have given it approval.

Just as a side note, Genzyme, the drug company that manufactures Lemtrada, engaged in some sleazy activity several years ago by pulling Campath off the shelves when it appeared that the drug – newly named Lemtrada – would sail through the approval process for use as an MS therapy (click here). Why pull Campath off the shelves? Because Genzyme planned to dramatically hike the price of the drug when they changed its name from Campath to Lemtrada and switched focus from leukemia/lymphoma patients to those suffering from MS. When used to treat leukemia or lymphoma, a typical course of Campath treatment cost about $60,000. Since MS patients would need a far lesser dose of the drug, the cost for a course of multiple sclerosis treatment would only be about $6000. So, Genzyme made Campath unavailable and only planned to reintroduce it as Lemtrada once it was approved for use in MS patients, at a dramatically higher price, of course. 

Although the drug has been approved in Canada, Australia, and EU, those places restrict the price of drugs, something that is unheard of in the US, where drug companies can pretty much charge whatever they please. And now the FDA has failed to approve Lemtrada, foiling Genzyme’s Machiavellian business plans. What goes around comes around, as they say…

♦ Having mentioned Tysabri and the fact that it improves the quality of life for many of those taking it, here are two studies that illustrate just that. One study (click here) shows that Tysabri treated patients require less sick leave from work 12 months after initiating treatment. This retrospective study demonstrates that one year after initiating Tysabri treatment, MS patients required 33 percent less sick leave than before they started on the drug. Another study looked at MS patients requiring inpatient hospital stays, and found that Tysabri treated patients exhibited “significant reduction in the percentage of patients with MS related inpatient stays, MS related inpatient costs, and length of stay” (click here).

Most MS patients know that taking Tysabri carries with it the risk of developing a potentially deadly brain infection called PML. Now that Tysabri has been on the market for a considerable amount of time, we have reliable figures as to just what the risks are of developing PML while on the drug. The latest figures indicate that patients who are JC virus negative (JC virus is the pathogen that causes PML) have very little risk of developing the infection, about a 1 in 10,000 chance.

For patients who test positive for the JC virus, two factors come into play in determining their risk of developing PML. The first is whether or not they’ve previously been treated with immunosuppressive drugs, and the second is the amount of time they’ve been on Tysabri. JC virus positive patients who have been treated with prior immunosuppressants have a 1 in 556 chance of developing PML during the first two years of treatment, and a 1 in 89 chance in years two to four.

JC positive patients who have not been treated with prior immunosuppressants need to keep a careful eye on the amount of JC virus antibodies present in their blood, which can now be checked by blood tests. Depending on these levels, the chance of developing PML for these patients in the first year of Tysabri treatment ranges from 1 in 1000 to 1 in 10,000, in years two through four from 1 in 123 to 1 in 3333, and in years four through six from 1 in 118 to 1 in 2500.

The above figures can be viewed nicely in the slideshow below. Click the symbol in the lower right-hand corner of the slideshow to view fullscreen (if that doesn't work, right-click on the symbol and choose "open in new tab"). I’d advise all Tysabri patients to familiarize themselves with these numbers, and make risk/reward calculations based on their individual circumstances, in conjunction with their neurologists. Knowledge is power, people; arm yourselves accordingly.

♦ One of the big problems I have with all of the currently available MS treatments is that they don’t do anything at all to address the root cause of the disease. How can they, since the root cause of MS remains completely unknown? Several recent discoveries may shed some light on that elusive cause, which increasingly appears to be at least partially infectious in nature. In one study, researchers found evidence that a soil-based bacteria, which has rarely if ever previously been found in humans, may be prevalent in MS patients (click here). Researchers reported that “that we identified this bacterium in a human is important enough, but the fact that it is present in MS patients is truly significant because the toxin targets the exact tissues damaged during the acute MS disease process.”

Another study found toxins secreted by bacteria associated with sinus infections in the cerebrospinal fluid of MS patients (click here). This is important because most blood-borne bacteria are blocked from entering the central nervous system by the blood brain barrier, nature’s way of keeping the brain and spinal cord isolated from the nasties that can infect other parts of the body. Infections in the sinuses, though, can circumvent the blood brain barrier by leaking directly from the sinuses into the central nervous system, opening up the possibility that nose to brain transport of bacterial toxins may play a key role in the MS disease process.

Though studies such as these are far from definitive, they do at least attempt to answer THE key question regarding MS: what in heaven’s name causes the freaking disease? There will never be a cure for the MS until that query is answered, and far too little time, effort, and money is currently being spent attempting to unravel this all-important mystery. One would think that such inquiries would be at the forefront of MS research, but instead, because most research is funded by pharmaceutical companies who must turn a profit to survive, the majority of MS research is currently targeted at finding new and better ways to suppress the immune system, resulting in ridiculously expensive drugs that may tame the disease but will never cure it. I’ll practice some self-restraint and stop this line of argument now, before I start ranting and raving and giving myself and my readers a migraine. Arghhh!

♦ Okay, on to one of my favorite subjects, the wonderful world of asinine research. Crack researchers in Germany have determined that spasticity is a problem for MS patients (click here). When I say “crack researchers”, I mean that the researchers must have been smoking crack. How else to explain them wasting time and precious research money conducting a study that confirms what is obvious to anybody suffering from MS spasticity, or anybody observing, even from a distance, somebody suffering from MS spasticity? The researchers could have spared themselves a lot of effort by just asking me or some of my MS buddies about spasticity. Spasticity sucks. End of study.

For those who are blissfully unaware of MS spasticity, the phrase refers to muscles that are rendered stiff and nonfunctional because they receive nerve signals to contract but not the requisite impulses to relax due to the fracked up nature of the MS ridden central nervous system, replete with faulty wiring and short-circuits. Spasticity can afflict almost any muscle in the body, and often causes considerable disability and pain. In fact, many MS patients consider spasticity their most troublesome symptom.

Now, through their earthshaking work, German researchers have, after fastidious and meticulous investigation, determined that “MS patients with spasticity suffer a significant burden because of resulting disabilities and reduced quality of life, especially in cases of severe spasticity”.

HOLD EVERYTHING!!! LIGHT MY PANTS ON FIRE!!! Do they mean to tell me that my twisted and clublike right arm and my clawlike right hand are not doing me any favors, and are in fact a “burden”? That my quality of life might be better if putting on a shirt, sweater, or jacket didn’t require my gimpified body to attempt the moves of a circus contortionist? That the “burden” of my disease would be less if I – gasp – didn’t have any spasticity? And all this time I’ve been gazing upon my twisted and useless appendages with such warmth and affection. Stupid me!

Let me save any researchers currently working on similar studies a lot of sweat and elbow grease. Not only does spasticity decrease quality of life, but weakness and paralysis can also be quite “burdensome”. Yup, arms and legs possessing all of the strength of a fart in a hurricane should not be counted as one of the pleasures of life. Also, bladder and bowel issues are not nearly as much fun as a night at the GiggleSnort Motel. That’s right, contrary to popular belief, urinary frequency and urgency don’t make for a whooping good time. Yes, I’d like to down a couple of pints of icy cold beer as much as the next guy, but I’d better be sitting on a toilet when I do so, because you could calculate the time it takes for the liquid to go from mouth to urethra with a stopwatch. Now, that might be the subject for some fascinating research.

Good grief…

♦ Being “retired” and grappling with a chronic debilitating illness leaves one with plenty of time to contemplate the mysteries of life, wondering just what the hell it’s all about. Gratefully, I came across the following video, in which Father Guido Sarducci (comic Don Novello) explains The Secret of Life. I actually recall the good Father doing this bit on Saturday Night Live back in the late 1970s, when the cast included such greats as John Belushi, Gilda Radnor, and Dan Aykroyd. I remember loving this monologue back then, and the intervening decades have done nothing to diminish its effect on my funny bone. Yup, life is a job, we’re all just here collecting our paychecks, hoping that our balance sheet comes out in the black when all is said and done…

Ciao for now…

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