Friday, December 21, 2012

Bits and Pieces: Doomsday/Happy Holidays Edition

English: An engraved illustration of Santa Cla...
English: An engraved illustration of Santa Claus and what may be Mrs. Santa Claus from the 1878 book "Lill's Travels in Santa Claus Land and Other Stories", by Ellis Towne, Sophie May and Ella Farman. Artist unknown. (Photo credit: Wikipedia)
Well, if the Mayans are correct, this might be one of my least read posts ever. Yup, as I write this, the doomsday allegedly predicted in the Mayan “Long Count” calendar, December 21, is only 2 ½ hours away. According to end of the world aficionados across the planet, the Mayan calendar ends on Friday, December 21, 2012. The ancient Mayans were remarkably expert astronomers, and their calendar was able to predict celestial events, such as eclipses, centuries in advance. Even more incredibly, they also predicted that their prophecy would provide cable television’s History and Discovery Channels with fodder for an endless amount of doomsday programming. If it weren’t for the Mayan doomsday, ancient aliens, and Nazis, these two media outlets would be forced to put up a test pattern 24 hours a day. Not that I’m complaining, because there’s nothing I like to watch more than Nazi aliens causing doomsday (much to Karen’s dismay). If the Mayans were correct, tomorrow should be interesting.

If, on the other hand, the Mayans weren’t correct, and the world doesn’t end in a terrifying cataclysm of meteor showers, catastrophic Earth changes, floods of biblical proportions, alien invasions, magnetic polar shifts, or a lack of cable programming, then Ho Ho Ho, Happy Holidays! Hope you were nice and not naughty this year, otherwise jolly old St. Nick will leave nothing but a lump of coal in your stocking. I can think of a few less savory lumps he might leave, but I suppose coal is disappointing enough to get the point across. Besides, if the Mayans were right, and doomsday strikes but you actually survive it, that lump of coal might come in pretty handy. So, this year you may be better off having been more naughty the nice.

To my mind, though, being really nice includes a prerequisite bit of naughtiness, so I’m not quite sure how Santa Claus actually divvies up his list. The naughty/nice divide is surely not black and white, but I guess that’s why Santa Claus gets paid the big bucks. Please, though, don’t tell me that stuck way up there in the North Pole with just Mrs. Claus and the elves that no naughtiness ensues. For Santa’s sake, I hope that Mrs. Claus makes liberal use of the Victoria’s Secret catalog…

Be that as it may, here’s this month’s selection of mostly MS related news tidbits that caught my eye over the last several weeks. Hope you find them entertaining and/or informative. If you don’t, feel free to pelt me with your lumps of coal, because I’m pretty sure that naughtiness is pandemic among the Wheelchair Kamikaze readership.

♦ I'd like to give a shout out (click here), which recently named Wheelchair Kamikaze the "Best MS Blog of 2012". Healthline is an extremely valuable patient resource, whose mission is to “improve health through information”, by providing readers with “objective, trustworthy, and accurate health information guided by the principles of responsible journalism and publishing.” One of the site’s unique features is an interactive, multimedia “MS Assessment Tool” (click here), which allows patients to objectively assess the state of their disease, and thereby make more informed treatment decisions. It’s really pretty cool. Actually, it would be cooler to have no need to use an MS Assessment Tool, but we can only play the cards we’re dealt. Healthline's Facebook page (click here) offers patients a rich social media experience for learning and interacting with others.

♦ At the risk of appearing like a gluttonous blog award whore, Wheelchair Kamikaze has also been nominated for a “Best in Show” award by Wegohealth. If you’d like to endorse that nomination, you can do so by using the badge located on the upper left-hand column of this page.

Okay, shameless self-promotion over.

♦ On the clear as mud MS research front, we have two interesting studies that looked at whether or not the interferon drugs effectively delay the progression of MS disability. The answer is a resounding “No” (click here). Also, a resounding “Yes” (click here). That’s right, two studies, two entirely different conclusions.

Okay, to be fair, the studies didn’t look at quite the same parameters. In the first study, the interferons (Avonex, Rebif, and Betaseron) showed no efficacy in delaying progression of disability to EDSS score 6, which basically translates into needing a cane to walk 100 m. This study compared contemporary treated patients, contemporary untreated patients, and an historical group of patients derived from older patient histories tracked before the interferon drugs were available. The results of the study are actually a little bit confusing, as the untreated contemporary patients time to EDSS 6 was 4.0 years, while treated patients took 5.1 years to reach the same level of disability, which would seem to indicate that treatment did have a beneficial effect on disability progression. The historical group took 10.8 years to reach the same EDSS score. However, more than twice the number of treated patients than untreated patients eventually reached EDSS 6, and four times as many reached that point in the historical group. When researchers mixed all of this data together, their conclusion was that the interferon drugs showed no beneficial effect in delaying progression. Confused? Me too.

The second study looked at whether or not the interferon drugs delay the transition from RRMS to SPMS. As all diligent MS patient should know, transitioning from RRMS to SPMS is not a good thing, as progressive MS has few if any effective treatments, and progressive patients generally experience a slow and steady increase in disability, without the benefit of any remissions. This study, conducted in Sweden, compared contemporary patients treated with DMDs with a historical group of patients from 1950-1964, decades before the DMDs were available. Although the abstract does not provide concrete numbers, the researchers conclude that the DMDs do delay the onset of SPMS, which, if true, is a very good thing.

So, what to make of these studies? I think that the only real conclusions that can be drawn are that no conclusions can be drawn. It appears that the CRAB drugs are more effective than many anti-drug advocates would have it, and less effective than mainstream neurology would like patients to believe. In the end, each patient must make their own decisions based on their own experiences. There does seem to be a growing body of evidence that shows a “window of opportunity” early in the RRMS disease process, when nearly all treatments are most effective. Once this window closes, it seems that the beneficial effects of the current MS treatments fall off dramatically. Personally, if I were a newly diagnosed RRMS patient, or a patient early in a course of relapsing remitting disease, I would opt to go with treatment. But again, that’s just me; each patient, in conjunction with their doctors, must assess their own situation, which, as the above shows, can be no easy task given all of the conflicting information.

♦ As patients, we must never forget how wonderful our caregivers are, if we are lucky enough to have good ones. It’s very easy for the strain on the caregiver to take a backseat to the problems of the patient, but the disease takes a terrible toll on all it touches. A study out of Mexico (click here) attempted to examine the impact of MS on the emotional health of caregivers. Researchers found that 40% of the caregivers they studied met the criteria for “probable major depressive disorder”. They furthermore found that the symptoms most likely to cause distress in caregivers were patient depression, difficulty talking, difficulty hearing, becoming upset easily, and upsetting other people. Patient symptoms causing the lowest average level of distress for caregivers included difficulty learning, seizures, trouble reading, difficulty eating, and difficulty writing. I found this surprising, as it seems that the symptoms that might be most troublesome to patients were found least troublesome to caregivers. This just illustrates the complexity of the patient/caregiver relationship, and the fact that 40% of caregivers were found to be clinically depressed speaks volumes of the hideous nature of multiple sclerosis. If you’ve got someone who cares for you in a loving, supportive manner, please take this holiday season to make sure they know just how much they are loved and appreciated.

♦ A while back I posted an essay that talked about how hard a job it can be just to be sick (click here), with seemingly constant battles with insurance companies and other organizations and individuals in the medical industrial complex. This opinion piece (click here) from the New York Times, written by a prominent business journalist who found himself in a mindbending skirmish with his insurance company when he simply tried to find out how much the pill that controls his blood cancer would cost, is a terrific example of just how maddening the “job” of being a patient can be. The article is really a must-read for anybody caught in the lunatic web of modern medicine as it is now practiced.

♦ The Scottish island of Orkney one of the highest rates of MS in the world, with one in 170 women on the island suffering from the disease. Researchers now think that the Viking ancestry of Orkney residents may be to blame (click here). Studies have shown that half the general population of the Orkneys originates from Scandinavia, and other studies show that areas colonized by those with Viking ancestry have higher incidences of MS as well. For example, in Canada the provinces colonized by the English and Scots have higher rates of MS than does Québec, which was colonized by the French. This would obviously point to a genetic link to the disease, although other factors must be in play as well, such as a lack of vitamin D (the places studied afforded their residence very limited sun exposure), as well as environmental elements. Furthermore, researchers found that even within Orkney there were “hotspots and cold spots. Some isles and parishes and villages had much increased rate and in other parts there were hardly any residents who had it.”

And all along I’ve been thinking that the worst thing about the Vikings was all the raping and pillaging. Now I can add MS to my list of Viking grievances. In the Vikings favor, though, is the fact that one of their kings was named Ivar the Boneless (click here), which is one of my favorite names in all of history. If there is anything to his name, good old Ivar may have been disabled (there are other interpretations, including that he might have been impotent), but that didn’t stop him from leading a brutal invasion of England. And this was way before there were any laws mandating the rights of the disabled.

So, with cheerful visions of Ivar the Boneless pillaging and plundering with his apparently wet-noodle like appendages dancing in your head, I bid you all the happiest of holiday seasons. May the coming year bring you copious amounts of good health and an abundance of happiness. May your fondest holiday dreams come true, and always remember that the greatest gift of all is love shared between family and friends.

Here’s a classic Christmas tune, sung by the always alluring Eartha Kitt, with some, um, unusual accompanists. I believe that this video proves that Boy George is a time traveler. Happy holidays!…

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Thursday, December 6, 2012

I Miss Me

I miss me.

Reduced to its essence, the Gordian knot of emotions in which I find myself evermore entwined as my disease progresses can, I think, be summed up in those three short words. All of the anguish, fear, confusion, sadness, mourning, determination, courage, nerve, and the dozens of other emotions engendered by my brawl with chronically progressing disability, when condensed and whittled down to their core, can be expressed by these seven letters: I miss me.

Though the words may be simple, the sentiments they embody are anything but. They touch on matters physical, emotional, and spiritual, an explosive critical mass of feeling that has become a constant companion, one that can be quieted at times by distraction and determination, but is never entirely hushed. Though I strive to make the best of a bad situation, there can be no denying it. I miss me, in so many different ways, I miss me.

I miss my right arm and leg, which although still a part of my body have become maddeningly uncooperative, more a hindrance than help. My left side is weak and getting weaker, and a peek through the curtains at what this foretells of my future is almost too frightening to look at. Was it only a dream that I was once able to use these balky limbs as if they were on automatic, most operations being carried out by commands issued on a level somewhere below willful consciousness? Now it seems even the simplest task takes at least a modicum of planning and forethought, more complex operations requiring creativity and the pushing of physical limits, while many others have become simply impossible.

What wondrous things my four working limbs were once able to accomplish! Walking, running, climbing stairs, dancing, yes dancing! Writing, drawing, typing, gesticulating, hugging! And that was just the easy stuff. My mind can still reach back to conjure up ghosts of the exhilaration created by driving a convertible sports car way too fast, one foot pressing hard on the gas pedal, the other commanding the clutch, left hand on the steering wheel and right on the stick shift, all four limbs working in concert to marry me with the machine. I can almost make real once again the feel of the road and the song of the engine caressing my body as I downshift into a turn, the nimble automobile an extension of my physical self, its throaty growl mixing with the warmth of the sun on my skin and the fingers of wind messing my hair to intoxicate the senses. No matter how hard I try, my current set of wheels cannot come close to what once was. My wheelchair just can’t cut it.

I miss the me who was free of illness, as flawed and discontented as that creature often was. If only I could trade my new troubles for those that used to keep me awake at night. I was really quite the neurotic, regularly going toe to toe with the demons of a multitude of anxieties, at times, methinks, seeking out reasons to be troubled. In retrospect, it just may be that I was more comfortable with feelings of distress than with those of joy. Boy, was I hard on myself.

Affairs of the heart were a special bugaboo, and one that I cultivated like an expert gardener, consistently hitching my wagon to “partners” who were like cyanide for the soul. I had the unfortunate talent of being able to latch onto the one woman in any crowded room who would cause me the greatest heartache. In matters of career, although I steadily climbed the so-called ladder of success, I often found myself working in settings that were absolutely suffocating. Although the work I did was creative (video production/editing), for long stretches I did it in extremely corporate environments, a square peg shoved into a round hole. Some people thrive in the highly structured atmosphere of corporate America, finding security and challenge in the hierarchy and politics of the workplace, but for me the necktie I had to wear each day was a noose, the office walls a prison. Each day I’d act a role I just wasn’t born to play, until my sense of self became twisted and blurred.

So what was there to miss, you might ask? Now that my old healthy life is just about completely divorced from the one I currently lead, I can see just how pregnant with possibility those times truly were. It was all really just a matter of choice. It wasn’t preordained that I find myself in unhealthy romances, and it certainly was within my purview to pursue work in situations more to my liking. The opportunity to create my own joy was infinite; the only thing holding me back was me, and the emotional baggage to which I stubbornly chose to cling. I was only as stuck as I allowed myself to be. If only I could reach back through time and give myself a good talking to. A common lament to be sure, but one made all the more keen by the knowledge of just how finite that precious healthy time turned out to be.

And besides, even through the bad times I had my share of fun, as I was always a bit of a rascal and a habitual night crawler. God, how I miss getting good and drunk, sitting with friends in a bar nurturing that happy oblivion. These days, booze only makes my symptoms exponentially worse, an effect that lasts for days after my imbibing. Also, alcohol on top of all of the pharmaceuticals I take to control those symptoms might very well put me in a coma. Dastardly disease.

Thankfully, in the years immediately preceding my diagnosis, I finally did learn some of life's lessons, and effectively changed my reality much for the better. I met and married a wonderful woman possessed of a truly good soul, and found work at the top of my profession, in an environment that, despite being world-class, was at times almost wanting for structure. Things were definitely looking up until that day almost 10 years ago when my right knee strangely buckled, and with it almost the entirety of my life over the next few years. Which brings me to the me I think I miss the most, the me that might have been.

Where would my path have a lead had I somehow dodged the cannonball of disease? I was diagnosed only one year after I was married, and although my wife has miraculously stuck with me, our life together is a far cry from that which we had once imagined. Eagerly dreamt of adventures abroad have been replaced by an endless parade of visits to a procession of doctors as my condition steadily worsened and my diagnosis became less and less clear. Weekends spent strolling hand-in-hand through the city and Central Park proved to be all too few, in their stead now the occasional walk and roll down the street together, my one functional arm and hand operating the joystick of my wheelchair, not slung across the shoulders of my betrothed, holding her tight. We make the best of it, and still manage to have a good time, but our husband-wife relationship now must make room for a patient-caregiver dynamic as well, making all too true the vow “in sickness and in health”.

At the time my disease forced me into “retirement” over six years ago, I was heading up one of the premier DVD production facilities in the world, and had played a key role in making of some of the best-selling music related DVDs on the market, some selling hundreds of thousands of copies. In the time since, the technology has moved to Blu-ray discs and streaming video downloads, a path my career likely would’ve followed as well. Would I today be working on providing content in its many forms for the explosion of media outlets driven by the Internet and portable devices? Would I have had a hand in perfecting 3-D technologies, or perhaps vehicles for entertainment and information distribution that are only now on the drawing boards? Might my career have morphed into something completely unexpected, and perhaps more fulfilling? For even though I had made it to the big leagues, I still felt that something was lacking, as my responsibilities had shifted from the creative to the administrative as I made my way up the totem pole. Would I have forged a chance to realize my creative ambitions? What new places might I have visited, what new people might've I met, what new experiences might have thrilled me? So much left unknown, and forever unknowable.

With all of that the disease has taken away, it has also bestowed some unexpected positives. Not working has afforded me the freedom and luxury of time, allowing me to pursue long neglected interests like photography and writing that had taken a backseat to my career and social life. The realities of creeping paralysis have provided insights and perspective into that which is truly important, and turned some philosophical abstractions into concrete strategies for coping and survival. I’ve learned the immeasurable value of kindness to others, and especially to myself, perhaps the hardest form of kindness to practice. Seizing the day, living in the moment, and mindfully occupying the now have all been transformed from platitudes into realities vital to maintaining serenity and sanity in the face of ever progressing disability.

Although it was already well-established, my sense of the absurd has germinated like a vine in a tropical rainforest, as the line between tragic and absurd is challenged daily by not only the disease but also all too frequently by the labyrinthine and often asinine medical establishment that exists ostensibly to treat it. Learning to accept help, and sometimes even ask for it, has strengthened my ties to humanity; truly no man can live as an island. Without doubt the most unexpected gift of all has been the response to this blog, which never ceases to shock and humble me. The idea that I might somehow be providing a form of comfort and assistance to my fellow travelers down this trail of blind curves has made what may very well have been unbearable bearable, and is something that I am thankful for every moment of every day.

But still, I miss me.

A lot.

(Wheelchair Kamikaze has been nominated for a "Best in Show" award by the good people at If you'd like to support this nomination, please give it your endorsement by using the badge at the very top of the left-hand column of this page. Please, don't feel obligated. Thanks.)

Addendum: this post has generated some tremendously insightful and moving reader comments. I'd urge anyone who found value in the above essay to read through these entries by clicking on the comments link, below.

A big "thank you" to all who commented. Your contributions to this blog are appreciated beyond words.

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Monday, November 19, 2012

Why Must Being Sick Be Such Hard Work?

English: 1942 photograph of Carpenter at work ...
Being sick sucks.

Of course, this notion is self-evident. Nobody in their right mind wants to be sick. For those who are otherwise completely healthy, even illnesses as benign as the common head cold bring with them a blanket of misery. That misery is multiplied exponentially when the disease you’re forced to deal with isn’t of the temporary variety, but instead is one that sticks around and steadily gets worse. Chronic and progressive disabling illnesses, such as multiple sclerosis, are especially cruel, as they wreak havoc not only on their victims’ bodies but on every aspect of their lives as well. As the disease progresses, hardship piles upon hardship, until accomplishing once simple tasks become daunting challenges requiring grit, determination, and sheer force of will. Putting on a pair of pants turns into an exercise in ingenuity and physical stamina; taking a shower metamorphoses into a death-defying feat. As the body becomes more and more rebellious, new methods of accomplishing old tasks must be devised, or else those old tasks must be dropped from the patient’s dwindling repertoire of the tightly entwined activities that represent normalcy and independence. Realizing that a button-down shirt has become a puzzle too complex to solve can really ruin one’s day.

Given the challenges inherent in grappling with a crippling illness, it would seem only fair that somehow the rest of the world would get with the program, and endeavor to make the life of sick people as easy as possible. Unfortunately, this just isn’t the case. On top of having to deal with all of the physical obstacles and frustrations of feeling lousy, and having to work around bodies increasingly on the fritz, chronically ill patients (or at least this chronically ill patient) are often met with a stupefying array of incompetence, insensitivity, and needless impediments, often personified by the healthcare establishment that is supposed to exist to help them. From the Byzantine bureaucratic bullshit of insurance companies to the sometimes mind-boggling incompetence of medical office staff, patients are often faced with uphill battles that can make getting proper care and needed services disheartening and daunting experiences, the equivalent of a particularly odious full-time job. Nevermind the innumerable frustrations of being disabled in an able world, attempting to navigate the medical landscape can drive one absolutely bonkers.

Back when I first came to grips with the fact that I did need a wheelchair, a notion which grew roots only after a heavyweight bout of denial, I had the not so great fortune to experience the exquisite pleasures of dealing with insurance company automatons, the folks at the other end of the line who excel at sounding entirely reasonable while spouting a line of crap longer than New York City sewer system. The insurance company brain trust decided that the perfect chair for me was one designed for indoor use only, which was completely ill-suited for life in the big city. This was at a point in my illness when I could still precariously hobble around my apartment, and the point of my getting a chair at that precise juncture was to allow me access to the world outside of my apartment door. Inasmuch as that world is smack dab in the middle of one of the busiest cities in the world, I needed a chair that was rugged, had long-lived batteries, and was relatively speedy, lest I get shmushed in the middle of trying to cross Broadway. Okay, I’ll admit that I also wanted a really fast chair because I thought having speedy wheels would be fun (I was correct), but getting around New York City does provide a need for speed. The wheelchair vendor that the insurance company referred me to apparently couldn’t give a damn about my real-life requirements, and insisted on trying to sell me chairs that were completely ill-suited for the task at hand, but were of the type preapproved by my insurance company. In other words, easy money for the wheelchair vendor.

The more I insisted on getting a chair I could actually use, the more the insurance company insisted that I was being unreasonable, and I was soon thrust into the company’s “appeals process”. Well, there was nothing appealing about it. Obviously designed to simply wear a patient down by attrition, the process was convoluted and nonsensical, as each appeal was decided upon by yet another layer of insurance company bureaucrats, thereby almost ensuring a continual string of denials. The entire exercise took on an air of the surreal, as I found myself vehemently arguing for a contraption the idea of which horrified me to no end. And I mean arguing in a very literal sense; phone clenched in my fist as I screamed myself hoarse trying to get my point across. As I generally am not a very confrontational person, it takes a lot to get me to the point of screaming, but the wheelchair madness got to where I would become absolutely apoplectic upon just seeing the name of the insurance company on my caller ID, worked into a lather before even answering the phone. After a full six months, and with the help of my neuro’s social work staff and photos documenting the cracked pavement, construction sites, eight lanes of traffic, and other realities of my urban environment, I was shocked with a phone call telling me that the insurance gods were sated by my burnt offerings, and that my appeal had been approved. Thus, The Wheelchair Kamikaze was born.

I’ve heard countless similar stories of other patients’ battles with their insurance companies, often times over treatments that the patients themselves were scared to death of receiving. Many patients simply give up, something I’m sure the insurance companies count on. They probably have charts and tables accurately predicting just how much corporate cat herding the typical patient will put up with before crying “uncle”. These patients are sick people, dammit, trying to feel better or make their lives easier. Instead of being treated as such, too often it seems the patient is treated as an adversary. Meanwhile, through all of the pleading, arguing, and appeals, the disease continues its relentless march, only heightening a patient’s sense of desperation. I believe this kind of treatment of chronically ill patients falls into the category of cruel and unusual punishment.

It’s not only the insurance companies that complicate the world of chronically ill patients. Insensitive doctors and incompetent office staff too often are the source of consternation, and just about every patient I know tells tales of the frustrations and sometimes sheer anguish visited upon them by folks whose job it ostensibly is to help them. One of the most common complaints are unreturned phone calls, usually placed when a patient experiences a disturbing new symptom or has a serious question about their condition. Let’s face it, not too many people call their doctor to engage in idle chitchat. Yet, getting some doctors and members of their staff to promptly return calls, or even just return them at all, is far too often an exercise in futility. Thankfully, my own primary neurologist’s clinic is an exception to the rule. The office runs a “nurse’s helpline”, on which I can leave a message that is invariably responded to that very same day by an intelligent and empathetic healthcare professional. Unfortunately, I can’t say the same of the constellation of other physicians with whom my condition has forced me to get acquainted, many of whose offices are Bermuda Triangles for phone messages left with office staff.

This lack of response puts patients in the uncomfortable position of either making repeated phone calls and risk being placed in the “pain in the ass” file, or just letting their issues go and leaving them unresolved. Worse still are instances when, out of sheer frustration, patients must take the lead in micromanaging their own care, in effect doing the job of office staffers for them. In the last six months I’ve found myself having to call hospital radiology departments to get the info needed to schedule tests ordered by one specialist or another, and have even had to call medical records departments in order to get test results sent to the ordering physicians, all tasks that should have been handled by the physician’s office staff. If I had waited for the staffers to handle things themselves, though, I fear I would still be waiting. I understand that such staffers are under constant barrage by needy patients, each of whom thinks their problem should take precedence over all others. The stress of dealing with seriously ill people day in and day out must certainly take its toll, but that’s no excuse for people simply not doing their jobs.

At the top of the frustration food chain are physicians themselves.Most are indeed outstanding individuals who take the time to get to know their patients and show a true interest in them as complex emotional beings, and not just broken bodies on which to ply their trade. Others, though, while clinically proficient, are seriously deficient when it comes to compassion and the art of listening. Neurologist horror stories litter Internet MS forums and chat rooms, tales of doctors who seem to place their own interests over those of the patients they treat, brushing off patient concerns with condescension and disregard, often acting as if they are doing the patient a favor by examining and treating them. This can leave patients more befuddled after their appointments than before, a situation that simply should not be. Yes, doctors are only human, and perhaps some patients expect too much of them, but at the end of the day it is the patient who is left alone to navigate the frightening world of chronic illness, a fact that should be at the forefront of every physician’s mind and personal code of conduct.

Yes, being sick can be very hard work. My MS friends tell story after story of almost unbelievable travails within the labyrinth that is modern medicine. Although different countries have different medical systems, it seems every patient, no matter where they live, has their own tale of battling the medical powers that be. Not every physician’s office is dysfunctional, not every doctor is an egotistical ass, and not every medical staff member is incompetent, but there are just enough that are to make being sick sickening. When I “retired” from my career six years ago I had no idea that a new occupation awaited me. Far too often, being sick is a full-time job.

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Thursday, November 8, 2012

Bits and Pieces: Batten Down The Hatches Edition

The clouds were amazing this afternoon during ...
First, thanks to everybody who inquired about my well-being after Superstorm Sandy hit the New York-New Jersey area. Luckily, I live in the uptown section of Manhattan, which was relatively unaffected by the storm. The folks downtown had it harder, as much of that area flooded and there were extended power outages and lots of property damage from the overflowing waters. As I’m sure most of you have seen on the TV news, some other areas had it much worse. Parts of Queens and Staten Island look like war zones, as does much of the New Jersey shore. The damage done to these areas was in some cases absolutely catastrophic, and those who live in them face months or years of rebuilding and trying to regain some sense of normalcy. My heart and thoughts go out to them.

The worst my area saw was some downed trees, which by comparison is barely worth mentioning. Subway service was disrupted throughout the five boroughs of New York City, as, for the first time in history, the New York City subway system was extensively flooded. City officials are still not sure when subway service will get back to normal. Although this has created hardships for millions of New Yorkers, Karen and I were not affected. Due to my disabilities, I haven’t been on the subways in years, as they have some serious accessibility issues. Karen is lucky enough to be able to walk to work; her rigorous commute is a walk through Central Park.

All in all, we got lucky. We live on the 18th floor of our building, and if we lost power for a significant amount of time, I’m not quite sure how I would get out of the building. I guess the police or firemen would have to carry me down the 18 flights, an exercise I’m sure none of us would enjoy. Particularly since I’m quite positive I wouldn’t be able to refrain from reeling off a string of pathetic attempts of humor, which might tempt my heroic first responders to “accidentally” drop me down some stairs. Note to self: in the event of an emergency, refrain from making wisecracks until you are on terra firma, lest you wind up being dropped on your head.

So, that’s the scoop on Superstorm Sandy from my perspective. Kind of scary that Sandy is called Superstorm Sandy, but I guess the combination of a hurricane and a nor’easter deserves a new moniker. We are experiencing another nor’easter as I write this, which will only exacerbate problems for all those folks seriously affected by Sandy. I blame it all on Ernest Borgnine, pretty much because I neurotically feel the need to have somebody to blame for everything. BTW, I’m quite certain my disease was caused by Ethel Merman.

Okay, enough with the preliminaries, here’s my monthly (or so) collection of MS related news items and informational tidbits. If you don’t like them, or find them boring, blame it on Zsa Zsa Gabor.

♦ CCSVI is always a hot topic, and although interest in the issue seems to have lost a little bit of its initial ferocious intensity, there were some interesting and newsworthy CCSVI developments over the last several weeks. After much outcry by the patient population of Canada, the Canadian government has finally given the go-ahead to a national CCSVI clinical trial (click here). While this is a positive development, like the entire CCSVI theory itself, these trials are not without their controversies, ranging from the size and scope of the trial to the makeup of the principals who will be conducting it, as is made clear in this article by Anne Kingston, a Canadian journalist who has been doing terrific reporting on all things CCSVI for several years now (click here).

Doctor Robert Zivadinov, who heads up the BNAC (Buffalo Neuroimaging Analysis Center) CCSVI research project, recently testified before the Canadian Senate on his research findings and their potential impact on not only MS but other neurologic diseases as well. The video of his testimony is must watch material for anybody interested in the current state of CCSVI research. Though the testimony runs almost 45 minutes, it’s time well spent and viewing it is highly recommended:

Zivadinov at the Senate meeting by dm_509535f98f233

Here in the states, CCSVI has finally hit the national media, in an article published in the widely read New York Times Sunday Magazine section (click here). It’s incredible that this far into the game CCSVI has been barely mentioned in the US news media, but this article is at least a good start. It very likely won’t make either ardent proponents or opponents of CCSVI particularly happy, which probably means it’s a pretty fair accounting of the topic. One can only hope that this article will spark some interest in the issue in the wider American newsgathering community, since the CCSVI saga has all the hallmarks of a juicy medical news item, namely a huge amount of patient advocacy, infighting between practitioners of different medical specialties, and a desperate patient population dealing with a potentially gruesome disease. The fact that the story has received almost no coverage at all in the US is truly mystifying.

♦ There have been several interesting developments on the MS drug front. The latest clinical trials show that the drug Lemtrada (formally known as Campath) is significantly more effective in stopping disease activity than the currently available treatments (click here). Lemtrada is a very powerful drug, initially developed to treat leukemia and lymphoma. A powerful immunosuppressant, Lemtrada basically takes down a patient’s entire immune system, forcing the body to “reboot” and rebuild a new one, an action that appears to have extremely beneficial effects on MS disease activity, in some cases even reversing a patient’s level of disability. The drug is given intravenously, every day for five days, and then, approximately one year later, another three doses over three days. Trials have found that the drug appears to remain effective as long as five years after being administered.

All of this sounds great on first blush, but Lemtrada can have some very serious side effects. About one in five patients taking the drug develop autoimmune thyroid disease, and a smaller but significant number can develop a potentially life-threatening (but treatable) blood disorder. As with all available MS therapies, the drug does not appear to be effective on patients suffering from progressive disease.

Lemtrada has also recently been at the eye of yet another example of outrageous behavior by pharmaceutical companies (click here). When it appeared that the drug was about to be approved by the FDA, the makers of the drug, Genzyme and Sanofi, started pulling Campath off the shelves to facilitate a huge increase in the price of the stuff, up to the levels being charged for other MS “blockbuster” treatments. Yes, the drug companies are going to dramatically hike the price of a drug that has been widely available for the treatment of cancer since 2001 simply because it’s approaching approval for use in a disease whose treatments are noted for their obscenely high prices. Some might call this sound business practice, but to me it sounds like simple old-fashioned price gouging. Shame on them.

The experimental oral MS drug BG 12 has also been shown to be quite effective in late stage trials, and was submitted to the FDA for approval (click here). Since the trials had shown the drug to have a very good safety profile, it was a surprise when the FDA extended its review process on BG 12 (click here). I was wondering what might have prompted that action when I came across this article (click here), which tells of a drug called Reata, which was being tested for use against kidney disease and shares the same molecular target as BG 12. Reata had its clinical trials abruptly halted because of serious side effects and even mortality among test subjects. Although the two drugs do share a common molecular target, they work in very different ways, so BG 12 quite likely won’t suffer the same fate as Reata, but better safe than sorry. Although the reason for the FDA’s extension in reviewing BG 12 has not been made public, I can only imagine that the problems with Reata might be the cause.

♦ has put together a list of 18 of the best MS blogs, and lo and behold, Wheelchair Kamikaze was chosen as part of the group. A big thanks to Healthline, and congratulations to the other blogs chosen (click here). Be sure to check out some of the other blogs on the list, they are all quite excellent, and each has a unique take on life with the disease. has also put together a collection of the best iPhone and android MS apps, so get ready to do some downloading (click here).

♦ This paradigm shifting, earthshaking study, entitled "Social and Economic Burdens of Walking and Mobility Problems in Multiple Sclerosis", reveals that walking and mobility problems cause significant problems for MS patients (click here)!!! Contrary to what severely delusional and/or heavily sedated people might think, patients with more severe walking and mobility problems (or WMPs, as the researchers like to call them) require more caregiver support, visit a greater variety of doctors, and require more non-disease modifying drugs than patients who have less problems walking. Can you fracking believe it? The researchers also found that work productivity was impacted by the severity of a patient’s walking and mobility problems. Wow! Freaking gimps, letting a little problem like not being able to walk get in the way of their ability to work! Upon further study, the researchers even found a more subtle link: levels of work productivity decreased when levels of walking and mobility problems increased. Again, who would’ve thunk it? As somebody becomes more crippled, their ability to work also becomes more crippled? Like, you mean, there’s a direct relationship? Holy Rollators!

Let me save future researchers some time, and provide these insights gleaned from my own life experiences: the ability of people with progressive retinal diseases to negotiate obstacle courses decreases dramatically when they go completely blind, patients with flatulence problems can really stink up the joint after eating several bowls of baked beans, and patients who die of cancer require a tremendous amount of medical attention until they expire, at which point they mysteriously stop being a drain on medical resources. Astounding conclusions, I know, but I take much pride in my keen analytical mind and powers of perception.

♦ Regular readers of this blog know that I have a thing for pointing out the deficiencies of our medical research process, and that many of my gripes are based on the fact that the vast majority of medical research is conducted by for-profit pharmaceutical companies, whose reason for existence is not to produce the best drugs possible, but the most profitable. Yes, sometimes these two endpoints come together to the benefit of all, but they can often be at odds, to the detriment of patients. The following video, part of the incredibly wonderful TEDtalk series, brings to light one particularly egregious aspect of how medical research is currently conducted. It’s quite common, it seems, for pharmaceutical companies to simply withhold inconclusive or negative drug studies, while publishing positive studies on the very same drug. This, of course, can lead to disasters in which drugs get approved but then are found, after hitting the general market, to have horrendous side effects. There are numerous instances of this occurring, and this video provides some of the reasons why:

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Sunday, October 28, 2012

Please Stand By (and a hooray for me)

The current logo for We're Experiencing Techni...
My apologies for the lack of a recent post, but my peculiar flavor of creeping paralysis has been especially troublesome of late, and I’ve been spending the bulk of my time in bed. I’ve also been dealing with what seems to be my own special version of the “post-lumbar puncture headache”, which in my case has manifested as extreme dizziness and nausea every time I assume an upright position. It seems that for whatever reason nothing about my disease ever stays on script, and even when I get a lumbar puncture headache it doesn’t present as a headache, but rather the aforementioned dizziness/nausea, making things much more confusing than they need to be. I’ve never minded that I've always marched to the beat of a different drummer, but the fact that my disease has decided to march to the beat of an entirely different symphony orchestra is really starting to bug me.

I needed the lumbar puncture as part of a diagnostic test called a cisternogram, done because of some recent suspicions that I might have a cyst pressing on the base of my brainstem right where my big, juicy, so-called MS lesion sits. Of course, if such a cyst did exist, it could be a game changer, and might explain much of the strangeness surrounding my illness. Getting rid of it would require some tricky open skull surgery that could be potentially dangerous in and of itself, but removing the cyst, if it actually were there, would likely have a very positive impact on my neurologic condition.

The cisternogram involved getting an injection of a contrast agent directly into my spinal column (hence, the lumbar puncture), followed by a series of CT scans, which would show the alleged cyst much better than a standard MRI. During my nearly ten year MS (or whatever it is the hell I have) career, I’ve literally had over twenty lumbar punctures (both for diagnostic and treatment purposes), and have had very little problem with any of them. In fact, I’ve often said that I’d rather have a lumbar puncture then dental work. Unfortunately, this time around, I’ve been zapped with post puncture putridity, which finds immediate relief when I relent from any efforts to achieve an upright posture and resume lying in a horizontal position. If the situation persists past this weekend, I’ll probably need a blood patch (click here) to seal the pinhole in the lining of my spine, but I’m hoping to avoid that, especially since Hurricane Sandy should be hitting here sometime Monday/Tuesday, making getting to the hospital for the procedure a bit of a hassle, to say the least.

Alas, initial indications are that the cisternogram did not detect a cyst, although I still need to do some final follow-up with my neurosurgeon. It’s very strange to find myself in the position of actually hoping for a brainstem cyst, the removal of which would necessitate getting my skull drilled open, but as distasteful as that prospect may be, it seems absolutely yummy compared to enduring the never-ending and increasingly disabling march of my disease progression. So, I’m pretty bummed that it looks like I don’t need delicate brain surgery. How’s that for a sentence I never thought I’d write?

On a much happier note, the fine people at BNAC (the Buffalo Neuroimaging Analysis Center) have decided to honor me and Wheelchair Kamikaze with a service award, which was presented on Saturday, October 20, at The Center’s “Brains and Gains” event (click here). The award is for:

 "Service in advancement of the understanding of multiple sclerosis among patients worldwide through and contributions of The Buffalo Neuroimaging and Analysis Center as Advisory Council Member, donor and friend".

BNAC does cutting edge research on CCSVI and MS, as well as investigations into a host of other neurodegenerative diseases. I’ve been on the Patient Advisory Board of BNAC for about a year now, and was very surprised to be chosen for the award (and also quite chuffed, as my British friends would say). My heartfelt thanks go out to Doctor Robert Zivadinov, Doctor Bianca Weinstock-Guttman, Dean Michael Cain, the delightful Linda Safran, and the rest of the BNAC staff. The rigors of dealing with everything that comes with having a mysterious chronic progressive disabling illness have been getting kind of punishing lately, and word of the award was a wonderful surprise coming at just the right time. Muchas gracias, BNAC…

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Monday, October 15, 2012

Multiple Sclerosis: The Ugly Truth

Distress and Coma
(Warning: the following essay contains frank descriptions of the physical ravages that can result from Multiple Sclerosis, and may be disturbing to some readers. Those who are sensitive, or would simply rather not know, should stop reading now. Really.)

For much of the healthy public, the face of MS comes in the form of celebrities who suffer from the disease. At the current time, here in The States the most prominent MS representatives are probably Ann Romney (wife of presidential candidate Mitt Romney), Jack Osbourne, and Montel Williams. Mr. Williams in particular has become a full-time MS activist, bringing welcome publicity to Multiple Sclerosis as he chronicles his struggles to fight the disease. I have nothing but respect for anybody battling this heinous scourge, and I don’t mean to belittle anybody’s misfortune, but I often find myself wishing that the public could see much deeper into the horrors that MS can inflict, beyond the relatively robust Mrs. Romney, the newly diagnosed young Mr. Osbourne, and the charismatic Mr. Williams.

The following snippet of an Associated Press article on Mrs. Romney’s experiences dealing with MS is typical of how the mass media often portrays Multiple Sclerosis:

“The wife of Republican presidential nominee Mitt Romney said Wednesday that her love of horses helped her overcome her fear that Multiple Sclerosis would put her in a wheelchair.”

As frightening as the prospect of being put in a wheelchair may be to the general public, the above quote significantly downplays just how monstrously devastating the effects of Multiple Sclerosis can be. I applaud any publicity that shines light on the disease, and certainly, it takes courage for those in the public eye to speak openly about their illness, but the beast that is MS can do far worse than leave someone reliant on a wheelchair. This public face of MS most often provides only a faint glimmer into the hellish world of those more severely afflicted with Multiple Sclerosis, a reality that can shock even those suffering from lesser ravages of the disease.

As a truly distressing depiction of the dark side of MS, the plight of former Mouseketeer and teenybopper starlet Annette Funicello stands in stark contrast to the sanitized version of the disease that is most familiar to the general public. Mrs. Funicello has been decimated by Multiple Sclerosis, its wicked impact leaving this once vibrant woman — who several decades ago epitomized exuberant youth — trapped in a living nightmare, her body gnarled and fully frozen while her mind presumably remains intact. For those who can bear to watch, Canadian television’s CTV network recently produced a video profile of Annette Funicello’s current condition, and her loving husband’s never-ending struggle to find some treatment to help relieve her suffering (click here for part one, and here for part two). Be forewarned that the content of these videos may scare the living shit out of you. Please don’t watch if viewing the worst that MS can do might have deleterious effects on your own ability to deal with the disease.

The past two weeks have not been kind to quite a few of my MS friends. One dear woman, who is amongst the sweetest souls I’ve ever had the pleasure to know, recently lost the ability to swallow, a development that necessitated the surgical implantation of a feeding tube into her abdomen. She will never again experience the simple pleasure of eating. Another friend, an accomplished artist who uses MRI images to make compelling pieces of visual art, informed me via email that she is now for all intents and purposes a quadriplegic, and can no longer use her own hands and fingers to bring her creative visions to realization. Instead, she “choreographs” a helper, providing verbal instructions to an able-bodied person in an attempt to maintain her artistic output. The anguish came through loud and clear in the voice of a big hearted man who has seen the disease rip apart not only his body but family and fortune too, while he haltingly told me that he had lost the ability to hold himself upright in a seated position, and has suddenly been plagued with fecal incontinence.

Through my many years of actively taking part in online Multiple Sclerosis forums, I’ve borne virtual witness to the steady decline and ultimate demise of more patients than I can bear to recall. The pattern has become hauntingly familiar; the slowly dwindling chronicling of ever mounting indignities and disabilities, and then a silence speaking loudly of total incapacity and sometimes even death. Occasionally, a family member will kindly put up a post informing the deceased’s online friends of their passing, but more often than not the person merely vanishes into the ether. I daresay my own online activities have similarly diminished as my disease (which still defies definitive diagnosis) has advanced, hopefully not a harbinger of things to come.

This is the true face of MS, a face little seen by the public at large. Of course, many patients suffer a far milder course of the disease, but a significant number do not. As much good as celebrity MS ambassadors can do, I fear they don’t convey the true depravity of the illness, and may in fact serve to lull the public into a sense of complacency regarding Multiple Sclerosis. Almost always, mention of the condition is accompanied by assurances of astonishing medical breakthroughs, of researchers on the verge of finding a cure, of proclamations that now is the best time in history to be diagnosed with MS. What’s left unsaid is that forms of the disease remain completely untreatable, and the pharmaceutical remedies available to those that are treatable are hugely imperfect, at best. An actual cure remains a distant dream, as the vast majority of research dollars are directed at developing new and supposedly better ways of suppressing the aberrant immune response allegedly responsible for the devastating effects of MS, resulting in drugs that can improve the quality of life of relapsing remitting patients, while quite possibly doing nothing to stem the actual progression of their illness. These drugs do not a whit to cure the disease, even as they reap huge profits for the companies that manufacture them.

The medical research model that has evolved in the United States is quite simply broken, warped by the corrosive influence of blockbuster drugs generating fantastic profits. Over 75% of medical research done in the US is funded by the major pharmaceutical companies, all of which are publicly traded entities. As such, they are mandated by law to be beholden to their stockholders, not to the patients taking their products. The job of a drug company CEO is to constantly expand his company’s bottom line, by endeavoring to create an infinite stream of ever-increasing earnings. Thus, research dollars flow to projects most likely to result in huge profits, and these projects tend to follow the lead of previously successful ventures. Scientific researchers, in need of steady income, are of course drawn to projects that will receive ample funding, and so a dysfunctional cycle has developed, one in which good people simply doing their jobs perpetuate a system of medical research that has failed to cure any major disease in decades. As the stream of government research funds dries up, due to harsh economic times and shifting political philosophies, the situation becomes even more acute. As the saying goes, the road to hell is paved with good intentions.

Perhaps if the public was privy to the hideous reality of those most severely afflicted with MS, and was made to understand that such cases are not mere outliers, their revulsion would spur an outcry that might shatter the status quo. It’s not as if there are no funds available to fuel the research efforts needed to conquer horrendous illnesses. The US Air Force’s newest jet fighter, the F-22 Raptor, comes in at a cost of approximately $350 million per airplane. The F-22 is a wondrous piece of technology, invisible to radar and able to cruise at supersonic speeds. It was originally designed to fight an adversary that no longer exists, the Soviet Union. The Air Force has 187 of these fighters. Would our nation’s defense be significantly hampered if the Air Force possessed only 184 of them? The roughly billion dollars saved could certainly fund a concerted national research effort that might rid mankind forever of diseases whose cost in human misery is incalculable. It’s simply a matter of priorities, and in the language of World War II GIs, the priorities of our society are FUBAR (Fucked Up Beyond All Recognition).

I’m constantly amazed at the courage, bravery, and fortitude displayed by the MS patients I’ve come to know, whose grit and determination serve to gird my own. If only our national zeitgeist would take its cue from the steadfast heroism of those afflicted with terrible diseases and those who care for and love them, and raise an outcry demanding that our nation flex its immense intellectual and financial muscle to find ways to better human life, rather invent technological marvels intended to destroy it. The generals could still have their high-tech toys, only a wee bit fewer of them. Perhaps if MS and other horrendous diseases were portrayed in their full horror, and not in the sanitized versions commonly depicted by our mass media, a change in priorities might be possible. There is a vast Holocaust happening just beyond the eyes of the public, a Holocaust that will likely continue until that public is forced to look upon the contorted faces of the afflicted, and is made to understand such a fate could very well be their own. As John Donne wrote centuries ago, “Ask not for whom the bell tolls, it tolls for thee…”

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Sunday, September 30, 2012

I Got A Rock

Cover of "It's the Great Pumpkin, Charlie...
(For those who receive these posts by email, this essay contains a video, which can only be viewed on the blog’s website,

In October, 1966, one of my all-time favorite TV shows, the Halloween classic “It’s the Great Pumpkin, Charlie Brown”, was first shown on American TV. Featuring Charlie Brown, Lucy, Linus, Snoopy, and the rest of the Peanuts gang, the program’s storyline revolves around Linus’s heartfelt belief that every Halloween a legendary character known as The Great Pumpkin rises out of a pumpkin patch to fly through the air delivering toys to all the world’s children.

I was three years old when the show first aired, and my mom was so taken with it that for several years after, much to my delight, some shiny new toys would appear in my bedroom every Halloween, delivered by The Great Pumpkin. They’d always be there when I returned home from trick-or-treating in our apartment building, going floor by floor in my costume, knocking on doors and collecting goodies in my trick-or-treat bag. The thrill of trick-or-treating and then finding new toys in my room made Halloween one heck of a holiday for the little me. Lots of sugar and brand-new toys, what kid could ask for more?

One part of “It’s the Great Pumpkin” has the Peanuts gang out trick-or-treating, going house to house collecting goodies from their neighbors. That is, most of the kids receive goodies; our hapless hero Charlie Brown is always tricked rather than treated, like so:

Yep, when the other kids delightedly look in their bags and announce the candy goodies they’ve received, poor Charlie reaches into his and displays his joyless bounty, glumly stating, time after time, “I got a rock.” This heartbreaking little scenario sums up life for poor Charlie. Despite being a kind and gentle soul, more often than not, when the fates hand out their tricks and treats, Charlie Brown almost always gets stuck with a rock.

At the time of my diagnosis, Charlie’s lament, “I got a rock”, immediately sprang to mind. Just when things finally seemed to be coming together, when the trajectory of my life was in a long anticipated ascendancy, the very foundations of my existence were torn asunder by a big demyelinated lesion at the base of my brainstem, a great big rock thunking down right in the middle of life’s goodie bag. I’m sure everybody else who’s ever received such a diagnosis knows the feeling all too well. That damned stone was so heavy that it knocked me off balance even before the disease itself would upset my physical equilibrium, and its unruly weight grows ever more difficult to wrestle with as the disease progresses with the passage of time. For sure, I got a rock, as has everybody else stricken with a chronic disabling disease.

As I became more disabled and forced to the sidelines, I watched, slightly dumbfounded, as the rest of the world simply went on without me, never even skipping a beat. Certainly, my illness has rocked (pun intended) the lives of those closest to me, but outside of that small circle, it’s almost as if I simply went “poof”. I don’t begrudge my former coworkers and acquaintances their successes, and I’m truly saddened to hear when one has met with misfortune, but the acute awareness of my absence from these goings-on is something I’m not sure I’ll ever get used to. I’m now stuck on the outside looking in, constantly grappling with a great big rock that somehow landed in my goodie bag, while most everyone around me continues collecting treats, even if those treats often go unrecognized.

MS itself has definite geologic properties. Certainly, my weak and spastic limbs have become as if made of stone, uncooperative ballast that makes accomplishing previously simple tasks maddeningly impossible. The overwhelming fatigue that has become my constant companion has me feeling as if I’m playing the role of Sisyphus, a character forced in Greek mythology to forever roll an immense boulder up a hill, only to watch it roll back down again, over and over again. Intellectually, I always understood that tale to be one of perpetual frustration, but now, physically, I’ve come to fully empathize with the exhaustion that must’ve plagued old Sisyphus. He got a rock, too, quite literally, only he was a right bastard, cruel and deceitful, and his fate was justice meted out by the gods. I certainly was never anybody’s idea of an angel, but I’m pretty sure the heft of the rock I’m lugging around far outweighs whatever transgressions I might have committed.

Yes, I got a rock. Although this stone is a heavy burden, I try to keep in mind that getting stuck with a rock need not be a purely terrible thing. Surely, having a rock can even sometimes come in handy. They’re good for throwing at people you can’t stand, for instance those who say things like “but you look so good” or “I have MS but MS doesn’t have me”, or to stone some of the self-righteous jackasses who with distressing regularity have “MD” after their names and the insensitive clods that often tend to them. It's also fun to lazily skip stones over the surface of lakes and ponds, a mental metaphor I use to remind myself that I actually never really liked working, and being forced to “retire” has allowed me to pursue interests and cultivate talents that might otherwise have forever been neglected.

Remember too that the pyramids of Egypt are made of stone, as is the Cathedral Notre Dame, and Michelangelo’s David. The rock that has so disrupted my goodie bag has led me to meet many fine people and make friends with folks I otherwise would have never gotten to know. It’s made me re-examine my priorities, bringing into crystal-clear focus the precious little in life that is truly important. That damned rock has given me an understanding of how downright miniscule were so many of the trivialities that I used to consider problems, slight bumps in the road that I could neurotically conjure into mountainous obstacles to endlessly fret over. It has also inspired me to write words that have, much to my astonishment, been read by so many people in so many places, and perhaps, if even in just the smallest way, somehow helped some of them.

The Great Pumpkin hasn’t left toys in my room for about four decades, but that’s okay, I’m grateful that I was ever on his list. Charlie Brown might have only found rocks in his Halloween bag, but he was the hero of the Peanuts stories, not the kids who got the candy. Though he had to suffer a beagle who liked to make believe he was a World War I flying ace, a best friend to couldn’t be without a security blanket, and the indignity of often being called a blockhead, in the end Charlie’s simple humanity always seemed to save the day.

Would I give back the rock that was forced upon me, despite the insights and understanding it has led me to realize? You better believe it, and faster than you can say “pumpkin patch”. Being sick and getting sicker sucks, but I have no choice in the matter. I do, though, have a choice in what I do with my rock. I can let it crush me beneath it, or I can at least try to reverse places, to stand on top of it and take advantage of the view. Given the polarity of these two alternatives, as long as my life still has life and is not merely an existence, there’s really no choice at all. And who knows, maybe one of these days I’ll find that some fine chocolate has displaced that rock. It may be the longest of longshots, but stranger things have happened. After all, I’m the only real life person I know who got presents from The Great Pumpkin himself.

Thanks, mom.

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Thursday, September 20, 2012

Bits and Pieces: Pharmaceutical Follies Edition

Oh, those pharmaceutical companies, always generating such tremendous tidings of joy and overwhelming warm and fuzzy feelings in the hearts of their adoring public. They’ve cured almost every disease that has ever plagued mankind, urged doctors to only prescribe their products when absolutely necessary, kept the price of medicine low enough so that even the most unfortunate can afford their wares, and have conducted their beneficent and altruistic research in a transparent, above the board manner that engenders absolute trust in all of their findings. How lucky we are to…

Whoops! Sorry, I started writing the above paragraph during a brief visit to an alternate universe, one much more to my liking, in which vintage Godzilla movies keep winning Oscars decades after they were made, bacon is a health food, blithering idiots are scorned rather than given their own reality TV shows, and I’m fluent in 10 languages, drive a mint condition 1956 Ford Thunderbird, and am a world-class triathlete. But, since I appear to have suddenly shifted back to this reality, I guess I’ll have to change the tenor of this blog post. Bummer.

I haven’t done a “Bits and Pieces” post in a while, because, well, it’s my blog and I’ll scribble what I want to. There’s been lots of stuff happening in the world of MS, and in the world in general, so in order to limit this post to a length not exceeding War and Peace, I’ll judiciously pick just which bits and pieces of info to highlight. Not that I’ve ever been willy-nilly about picking bits and pieces in previous posts, but I needed an excuse to use the expression willy-nilly, due to an obligation made in an alternate universe. We all must do our part to keep the cosmos in order, you know…

So, presented for your review are the following tidbits of mostly MS related news items, most of them having to do with pharmaceutical companies and their products, with a liberal dose of my take on things thrown in. Bon appétit…

♦ A study which throws into question the efficacy of the interferon drugs (Rebif, Avonex, and Betaseron) to alter the course of MS disease progression (click here) has caused quite a bit of hubbub on numerous Internet MS related forums, blogs, websites, and Facebook pages, and rightfully so. This retrospective study looked at three groups of MS patients, and tracked the course of their disease over a ten-year period. One group was comprised of patients who were treated with the interferon drugs, another of MS patients that were left untreated, and a third was comprised of patients from before the days that the interferon drugs were first made available (they arrived on the scene in the mid-1990s). The study found that patients treated with interferon were no less likely than untreated patients to experience disease progression leading to significant disability.

However, another study, which received much less play in the Internet MS universe, came to the exact opposite conclusion, finding that the interferon drugs do significantly reduce the risk of progression for multiple sclerosis patients across the board (click here).

So what’s going on here? Obviously, it’s hard to say, but, as this article points out (click here), the study that found the interferons ineffective had some possible methodological flaws. One might assume that the population of patients in the untreated group was left untreated because their disease was generally less severe and aggressive than those who were in the treated group, which would invalidate a direct comparison between these two patient populations. If this were the case, the study’s findings would actually show the interferons were effective, because they kept patients with more severe disease from progressing more quickly than those with less severe disease.

Whatever the case, the situation remains as clear as mud. The interferon drugs are much disparaged among many MS patients, because they obviously do not cure MS, cost a fortune, have very unpleasant side effects, don’t work at all for many who try them, and, to top it off, are injectables, and nobody relishes the idea of giving themselves a shot several times a week. What does seem clear, though, is that, at the very least, these drugs do offer some patients relief from debilitating relapses, even if they don’t ultimately alter the course of their disease. Many patients report a severe curtailing of their relapse rates once on the interferon drugs, which amounts to a significant uptick in their quality of life. This benefit cannot be discounted, even if interferons ultimately do prove to be worthless in stopping disease progression, which of course would be disappointing. I’m not one to defend the pharmaceutical companies, but the interferons were never approved under the auspices of stopping disease progression; rather, their approval was based on their ability to reduce relapse rates and the amount of enhancing lesions as seen on MRIs. It was hoped that these two effects would translate into a lessening of disease progression, but that was always just an assumption, a point never tested in clinical trials.

An interesting window into the opinions of patients about this issue is the comments that appear after a piece Julie Stachowiak wrote about the negative study in her always excellent MS column (click here). I expected to see a fusillade of outrage voiced by the commenters, but surprisingly, a preponderance of the comments are from patients who say they’ve benefited from the interferons and intent to stay on them because of their increased quality of life. I guess the bottom line is that, drugs or no drugs, MS sucks, and will continue to suck for the foreseeable future. Actually, that’s pretty much the bottom line about everything related to MS…

♦ Here’s an example of a pharmaceutical company snatching victory from the jaws of defeat. The FDA recently warned about seizures associated with the MS drug Ampyra (click here), made by Acorda pharmaceuticals, which is supposed to improve the ability to walk in some MS patients. Much to the chagrin of investors, this warning caused a marked decrease in Acorda’s stock price. Ampyra is given in 10 mg doses, and the FDA asked Acorda to conduct trials to see if a 5 mg dose would be as effective as a 10 mg dose while cutting the risk of seizures.

The results of this follow-up study showed that both the 5 mg and 10 mg doses of Ampyra failed to demonstrate any efficacy in regards to increased walking ability (click here). Acorda claims that this is because the methodology used in this study was different than that of the original studies. Regardless, Ampyra remains on the market in 10 mg doses, since it was previously approved by the FDA based on prior clinical study results. In a happy twist for the drug company and its investors, even though the drug failed the follow-up study, the fact that the 5 mg dose was ineffective means that Acorda retains its long-term patent rights on the 10 mg dose, whereas if the 5 mg dose have been effective copycat drugs could have been manufactured and placed on the market as soon as 2017 (click here). Acorda’s stock price rose on this news, so all is well in investor land, despite the fact that the drug can cause seizures and may be largely ineffective. So, bad news for MS patients, good news for those making money through the marketing of a drug whose efficacy is highly suspect. Talk about alternate universes…

♦ In a case that didn’t work out quite as well for the drug company, Genzyme submitted the drug Lemtrada (formally known as Campath) to the FDA, fully expecting an approval. The company was so confident that the drug would be approved that they started pulling Campath, which had been marketed for years as a treatment for leukemia, off the shelves to keep it from being used off label to treat MS. This was done so that Genzyme could hike the price of the renamed drug to fully take advantage of the more lucrative multiple sclerosis market (click here). After all, MS patients need to take their drugs for years on end, but victims of leukemia either go into remission or die, limiting their necessity to consume drugs. But, ha ha on Genzyme, the FDA turned around and requested that the company resubmit their application (click here), asking the company to change the presentation of the data so the agency can “better navigate the application”, whatever that means. The FDA didn’t order any additional trials of studies to be run.

While it feels good to see a case of corporate greed smacked back, even if only a little, Lemtrada is an interesting MS drug. It is a powerful immunosuppressant, but has been shown in studies to actually decrease the amount of disability seen in patients, even five years after they stopped taking it (click here). This is a result previously unseen with any other MS drug, and may be due to the fact that Lemtrada is such a strong immunosuppressant that it forces the body to rebuild its immune system. This is a similar mechanism to some autologous stem cell treatments, in which a patient’s immune system is completely wiped out with very potent chemotherapy drugs, and then “rebooted” through the use of an infusion of bone marrow stem cells. The effectiveness of the drug does come at a price, though, as 30% of those taking it develop autoimmune thyroid disease, and a smaller percentage develop a serious blood disorder. Unlike Tysabri, though, for some reason the risk of serious infection seems to be quite low, despite the powerful immunosuppressive characteristics of Lemtrada. For patients willing to take the risk, Lemtrada, if and when it is eventually approved, may be the most effective MS drug available. Of course, it only works for RRMS patients; those with SPMS or PPMS are, as usual, left to flap in the breeze…

Having said all that, it sure would be nice if researchers would concentrate their efforts on finding ways to combat MS that don’t tinker with the immensely complex human immune system, since this approach clearly leaves patients open to potentially lethal side effects while doing nothing to actually cure the disease. Perhaps trying to figure out why the immune system goes bonkers in MS patients would be a good place to start…

♦ Just to bolster your confidence that science is aggressively attacking some of the most important issues facing mankind, a cure for baldness appears to be closer than ever (click here). Apparently, Vitamin D holds the key, and researchers around the world are scrambling to finally solve the horrendously tragic and heartbreaking epidemic of typical male pattern baldness, which has brought frustration and shame to men longing to be hairy since time immemorial. Just think about how much time and money is being spent chasing this cherished dream, and how many brilliant minds are dedicated to it. Forget about cancer, heart disease, ALS, and even MS – rejoice, for soon baldness may be cured! I know that I, for one, even with my head full of thick, voluminous hair, will celebrate mightily when the cure for baldness is finally announced. I’ll sit in my wheelchair and feebly raise a pathetically weakened fist as high in the air as my ever more afflicted muscles will allow, reveling in the knowledge that some perfectly healthy bald men will soon be able to proudly make appointments at barbershops and hair salons the world over. It’s all about priorities, people, and mine are definitely in order.

♦ This little bit of news is funny and sad at the same time. Seems an MS suffering grandfather in Scotland forgot he was married and wed his girlfriend, getting into all kinds of trouble due to the fact that he is now a bigamist (click here). The 50-year-old claims he thought his first wife had signed divorce papers, but he apparently forgot that she hadn’t.

In all fairness to the gent, he’d been separated from his first wife for several years, and MS does cause cognitive and memory issues in many who suffer from it. Furthermore, his second wife left him a few months after they were married, and the stress ensuing from this whole mess triggered a relapse, leaving him using two crutches. I’ve had women leave me emotionally crippled before, but this guy really got the short end of the stick. Or, in his case, sticks. In related news, a new study found that ginkgo biloba, an herbal remedy purported to improve cognitive function, had no effect on the cognitive abilities of MS patients (click here).

♦ If you’re in need of a little inspiration, this (click here) infographic about the Paralympics can provide plenty of it. Recently completed in London, this international sporting event for disabled athletes embodies the best of the human spirit. Though the bodies of participating athletes may not fit the standard definition of perfect, their hearts certainly defy definition.

I’ll leave you with the following video, in which a noted brain researcher recounts her experiences during and after suffering a stroke. These experiences provided her with startling and fascinating insights into not only the workings of the human brain, but of the universe and our place in it as well. I have an endless fascination for the mysterious place where science gently kisses spirituality, and this talk navigates that enigmatic realm as well as any I’ve ever heard. It’s 20 minutes long, but I guarantee it’s time well spent, and will provide you fodder for much contemplation…

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