A Few Bits and a Piece: Tecfidera Poll Continued, Interesting New MS Web Community, Hand Controls for Disabled Drivers, and Some Shameless Self-Promotion…

I know, I know, faithful Wheelchair Kamikaze readers are thinking, “Geez, Marc just did a Bits and Pieces post last time around, and now he’s doing another one? What gives?”

Well, what gives is that Karen and I are embarking on a journey up to Maine this week, to attend my friend Harvey’s 50^th birthday party. Harvey and I were thick as thieves (just about literally) way back in the wild and woolly 80s, when many a night would find us in various stages of intoxication prowling the dark streets of Boston looking for a good time. In retrospect, I think the best of the good times we found were in the prowling itself, proof of one of the most important lessons the years between then and now have taught me: it’s all about the journey, not the destination.

And now Harvey will be turning 50 on Friday, with my turn at reaching the half-century mark following a week and a half later, an event which I’m sure will provide plenty of fodder for a blog post or two. I’ve been reluctant to travel the last few years because of my goddamned creeping paralysis, but the significance of my buddy’s 50^th birthday has provided the impetus for plans to be hatched and reservations to be made.

Our impending trip up to Maine will be the first time Karen and I have spent an extended period away from home in at least three years, and I must admit the prospect of leaving my comfort zone is a bit anxiety producing. My disability has progressed significantly since the last time we hit the road, and even back then traveling presented some troublesome issues, mostly in the way of unforeseen obstacles, physical wear and tear, and “wheelchair accessible” hotel rooms that appeared to be designed by dyslexic chimpanzees. We’re renting a wheelchair accessible van this time around, which hopefully will decrease the physical wear and tear part of the equation (we previously traveled with my manual wheelchair, which I despise – my arms are too weak to self propel, so I sit in the thing feeling as useless as a two-day-old latke). I do love New England and Harvey, so, WTF, might as well go for it…

I’ve been and will be busy getting ready for the trip, and didn’t want to leave the blog completely devoid of new material, so I figured an abbreviated version of Bits and Pieces would at least give all the lovely folks who read my gibberish a few new links to click on and with any luck some useful/interesting info to digest. I hope the following few items will suffice, as quality versus quantity is a nice correlate to journey versus destination…

♦ First up, a continuation of the Tecfidera poll I started in my last post. So far the responses have been quite interesting, and I’d like to get a bigger sample size to increase the accuracy of the information gathered. As I stated last time around, any Internet poll is bound to be somewhat skewed (since I’m not capturing data from Tecfidera patients who aren’t perusing the web for info), but the numbers accrued should provide a reasonable snapshot of the Internet Tecfidera population, at the very least. If you’ve already answered the poll questions, please don’t answer them again, as your previous answers carry over to this week. For those interested in how things are stacking up, just click the “show results” link after each question to see the aggregated numbers…

How would you characterize the side effects you’ve experienced as a result of taking Tecfidera?


Have Tecfidera’s side effects forced you to stop taking the drug?


(This question should only be answered by those who have not stopped taking Tecfidera) How would you characterize any benefits you’ve felt since starting Tecfidera therapy?



♦ I had the pleasure last week of speaking to Kate Millikan, the founder of a brand-new MS Internet community that takes a somewhat different approach to things than other such sites on the web. My Counterpane (click here) gives MSers and those who care for them the opportunity to track and record their experiences with multiple sclerosis, based on the moods and emotions dealing with the disease elicits in them, in a multimedia diary format. My Counterpane offers a rich, textured experience, providing members with an easy way to record web videos directly to the site, along with allowing for the more typical written and/or picture entries. Members can contribute their own experiences as well as follow those of other patients and caregivers in the My Counterpane community.

Please keep in mind that My Counterpane is a work in progress, and I know that Kate is investing lots of time and energy in making the site as distinctive and compelling as possible. Expect some new features to come online soon, perhaps even some interactive forums that could be as unique as the site itself. So sign up and give My Counterpane a whirl, it’s completely free and may provide a whole new way of looking at the personal experiences shared by MSers.

Oh, for those as clueless as I am, a counterpane is a type of quilt. Since My Counterpane is a site stitched together from the recorded experiences of many MS patients, the name fits perfectly. Unfortunately, I had absolutely no idea what a counterpane is, but now I've learned a new word. Yay! Must pepper my road trip conversation with lots of references to counterpanes (Karen is going to hurl me from the fast moving van somewhere between Connecticut and Maine).

♦ Halo Hand Controls were invented by a man named Daniel Reyes, who lost a leg when he was hit by a runaway car while standing at an intersection in Los Angeles. Mr. Reyes is a bit of a car nut and long time entrepreneur, and he came up with the Halo device (click here), a low-cost and elegant take on automobile hand controls, which allow folks with lower body disabilities to safely drive a car. Most hand control setups cost in excess of $1000, but Mr. Reyes has decided to give away the Halo to those in need, provided he can raise the needed manufacturing costs through a crowdsourcing funding effort on the Indiegogo website (click here).

If you are interested in helping with the Halo Hand Control project, donations from $5-$5000 are being accepted on the site. A $50 donation will make sure that a person in need gets a Halo Hand Control. If you need a Halo, a $250 donation will get you your own Halo Hand Control, as well as provide one to another person in your name. IMO, this is a very good deal for folks in need of hand controls for their vehicle, as installation costs are minimal and, as I noted above, most other hand control devices cost in excess of $1000.

Those in need of a Halo who can’t afford to make a donation can sign up for a waiting list at the Halo Hand Controls User Group on Facebook (click here). Unfortunately, since supplies will be limited, there’s no way to guarantee that signing up on Facebook will get you a device.

Longtime Wheelchair Kamikaze readers know that I rarely endorse fundraising efforts, but Mr. Reyes seems quite genuine in his desire to help others, and the device he invented certainly fills a much-needed niche.

To see how easy installation of the Halo actually is, check out the video below:

 

♦ My last bit of business is a some shameless self-promotion. Here in NYC, the streets are flooded with taxicabs, but the vast majority of them are not wheelchair accessible. A few years ago, the city tried to roll out an accessible dispatch service, which was a dismal failure. Karen and I gave it a try twice, and both times were left standing (me sitting) on the corner of our block for two hours. If a wheelchair accessible cab showed up, it must have been an invisible one. Now, the city is trying again, and this time the effort seems headed for great success (click here). A wheelchair user can request an accessible taxicab via smartphone app, website, or telephone call, and the city will pay the taxi driver for the trip to the wheelchair user’s location. In all honesty, I’ve yet to give the new service a try, but others have told me that it works like a charm.

As part of the Accessible Dispatch program’s promotional efforts, the folks in charge are maintaining a blog, on which they highlight items of interest to the New York City disabled community. One of the items of interest they picked for their blog, most likely in a moment of feverish delirium, was me (click here)! After an over the phone interview, the good folks at Accessible Dispatch wrote up a way too nice essay on me and my photography, and, for those of you brave (or masochistic) enough to want to listen to the sound of my voice, the post even includes a link to an audio snippet of our interview (please note: as of this writing, it appears the audio snippet is temporarily down. I’ll have to alert the powers that be of the glitch).

Here’s a video of the Accessible Dispatch team at a recent NYC Disability Expo, explaining a bit about how the program works:

 

Well, that’s it for now, I’d appreciate all wishes of Bon Voyage for our trip to Maine, and might as well throw in a few Happy Birthdays to Harvey as well…

Bits and Pieces: Tecfidera Poll, Pharmaceutical Shenanigans, and More…

Support medical research: Your life depends on it! (Photo credit: afagen)

(For those who receive these posts via email, the following contains several interactive features and videos that can only be accessed on the Wheelchair Kamikaze website. Please click here to open Wheelchair Kamikaze in your browser.)

It’s time once again for another edition of “Bits and Pieces”, a regular feature of this blog in which I present mostly MS related items that have found their way into my knapsack as I rummage around the Internet. But first, I’m going to try something brand spanking new. Drumroll please…

Okay, brace yourselves for the first ever Wheelchair Kamikaze interactive poll, where readers can register their responses to a few questions, and we can all view the results as they roll in. Creating this rather simple poll was much easier said than done, as the blog platform that I’m using doesn’t provide a handy a way to embed polls in blog posts, but with the help of the Google gods I figured it out (I hope).

The poll attempts to investigate the experiences of Tecfidera users, so, naturally, active participation in the poll is limited to those who have used or are currently using the new MS pill. I expect the results should be interesting for everybody with MS. A few months ago I put up a couple of blog posts summarizing some of the research I did on Tecfidera (click here and here), and the posts have received an incredible number of hits (over 30,000 and over 13,000, respectively), so I figure interest in the subject is high. I’m as curious as anybody to get a snapshot view of the Tecfidera patient experience.

Of course, the results of following poll will be completely unscientific, and are subject to the general whims and vagaries of the inter-webs. So, whatever the results, please take them for what they are, an amateurish attempt at patient pulse taking, hopefully interesting but far from definitive.

So, without any further fanfare, here’s the first ever Wheelchair Kamikaze reader poll. In the interest of trying to maintain some semblance of accuracy, please only answer the poll questions if you have actually taken Tecfidera, and if you are a Tecfidera user, please answer each question only once. No stuffing the ballot box, so to speak. Hopefully, the Google gods will not have steered me wrong, and this will actually work:

How would you characterize the side effects you’ve experienced as a result of taking Tecfidera?


Have Tecfidera’s side effects forced you to stop taking the drug?


(This question should only be answered by those who answered "no" to the previous question) How would you characterize any benefits you’ve felt since starting Tecfidera therapy?


All right, hopefully the poll did not cause this blog post to go kablooey, and we can continue on with our regular “Bits and Pieces” business. Here’s a collection of various MS related items that have caught my attention over the past month or so:

♦ There’s been a lot of news recently about the sometimes nefarious shenanigans engaged in by pharmaceutical companies. As long-time readers of this blog must be aware, I’m apt to go off on anti-Big Pharma tirades, but I promise I’ll try to control myself.

First up, an article from the New York Times about efforts currently underway to force pharmaceutical companies to release all of the research results related to the drugs they bring to market (click here). Hard as it is to believe, it’s an all too common practice in the medical research world for unfavorable data gleaned during drug trials to be suppressed and only positive info brought to light. Studies have shown that only about half of clinical trial results make their way to publication, and the vast majority of those results are positive. This phenomenon is known as “publication bias”, and is increasingly being recognized as a major flaw in our medical research model. In effect, it forces doctors to prescribe drugs without having full knowledge of the effects of those drugs, because unfavorable data is shielded from public view. The problem has become so widespread and troubling that the European Medicines Agency, which oversees drug approvals in the European Union, is considering a proposal that would force pharmaceutical companies to release all research results, positive and negative, related to drugs being submitted for approval.

While some drug companies are making a public show of voluntarily opening up all of their research results, it seems that others are not being quite so agreeable. As this article from the British newspaper The Guardian details (click here), a leaked memo reveals that powerful European and American pharmaceutical lobbying entities are attempting to mobilize patient advocacy groups (many of whom are reliant on pharmaceutical company funding) to raise fears that full disclosure of research results might be misinterpreted and lead to waves of health scares. Yes, the drug companies are trying to get patients groups to argue that withholding negative research data is actually in the public’s best interest. Here in New York City, we’d say that such efforts by Big Pharma take a humongous set of balls.

The roots of problems such as publication bias lie in the fact that we’ve evolved a medical research system that is increasingly dominated by the pharmaceutical companies. As this article from the Australian newspaper The Age nicely summarizes (click here), a joint review by American, European, and Australian researchers describes “how the enormous profit involved in making and selling drugs gave the industry power to influence every stage of the health system.”

Many decades ago, medical research was primarily the province of government and academic laboratories. Over the last 25 or so years, though, as the profit potential of pharmaceuticals has skyrocketed, more and more of our medical and drug research is being funded by the pharmaceutical companies themselves. Can anybody say “conflict of interest”? As an Australian doctor quoted in the above linked article states, ''Asking corporate sponsors to conduct pivotal trials on their own products is like asking a painter to judge their own painting to receive an award.'' Keep in mind, were not just talking any products here. Having painters judge their own work wouldn’t have the potential to cause physical harm to those who view their paintings, but allowing pharmaceutical companies to conduct research on their own products has already proven, on numerous occasions, to have potentially dire consequences on the patients taking their drugs.

Unfortunately, this situation is only likely to get worse, as economic and political constraints are leading governments to cut back on the already insufficient funding being devoted to medical research, as is detailed in this article (click here) about cutbacks to funding of the National Institutes of Health, the main government medical research facility in the United States. The NIH has long been at the forefront of innovating ground-breaking medical techniques and technology, but cutbacks to funding are effectively leaving the organization hamstrung, and are ceding more and more influence to Big Pharma.

Let me state that I don’t believe that the pharmaceutical companies are evil entities intent on doing harm to an unsuspecting public. They are only doing what corporations are designed to do, make as much money as possible. Most of the drugs they produce, including the MS disease modifying drugs, have increased the quality of life of millions of patients suffering from dread diseases. As public companies, however, the pharmaceutical giants are mandated by law to be beholden to their shareholders, not to the patients taking their products. While this has led to the production of many hugely profitable blockbuster drugs, it hasn’t led to all that many cures, as curing a disease pretty much eliminates any potential profit to be made from treating it, effectively violating a public corporation’s legal mandate. As I’ve said many times before on these pages, capitalism is a wonderful tool for creating wealth, but when married to medicine the results can be nauseating. Thankfully, there’s a pill for that.

♦ Okay, I’ll step back from the ledge, and refrain from engaging in a full throated rant. Let’s turn our attentions to more positive fare. Here’s a cool little interactive graphic, courtesy Healthline.com, which helps explain some of the common phrases thrown about in the MS patient lexicon. Just click on the graphic to to open it on the Healthline site, where you can mouse over the words to see definitions pop up. It's really kind of cool…




♦ Here’s a video, presented by Everyday Health and Dr. Sanjay Gupta, about a weighted vest that helps MS patients suffering from lack of balance. Kind of an interesting concept with the potential to help many people, and the physical therapist featured in the video is none other than Dr. Stephen Kanter, who is the PT at the MS clinic at which I am a patient. As a matter of fact, I was just in the room that Dr. Kanter is being interviewed in last week. Can my life possibly get any more exciting?

♦ Oh goody, here’s another piece for my ongoing collection of asinine research studies. It’s a brilliant example of scientific exploration that delves into the mystifying question as to whether or not being told they are JC positive makes patients on Tysabri more anxious (click here). For those who aren’t aware, the JC virus is responsible for PML, the potentially deadly brain infection that has been linked to the MS drug Tysabri. Patients who are JC virus negative have a negligible chance of developing PML. JC positive patients, though, have a far greater risk, in some cases less than 1 in 100. Can you guess what the researchers found? Brace yourself for the shocking conclusion, because the investigators discovered that Tysabri patients who are JC positive are significantly more anxious about taking the drug then their JC negative counterparts! Who could have possibly guessed that patients that are far more likely to get a horrible and potentially deadly brain infection due to the medication they are taking would exhibit more anxiety about that medication than those whose risk is barely registrable?

Reading about this research led me to do a little thought experiment of my own. Given my fertile imagination, I assure you that going through with the actual experiment is entirely unnecessary. After much intense thought and contemplation, I’ve concluded that attaching a small guillotine to my gonads would make me significantly more anxious than not having to cope with the perpetual fear of having my family jewels chopped off any second. Of course, just to be sure, I’d like to run this experiment in real life on several hundred men, mostly pharmaceutical and insurance company executives. Where do I go to get my research grant?

♦ This last video has nothing at all to do with pharmaceutical companies, MS, or medicine whatsoever. It does feature a dog, an omelette and Bossa Nova, though, three of my very favorite things. I hope you get as big a kick out of it as I did…

Well, that’s it for this edition of Bits and Pieces. Thanks for reading Wheelchair Kamikaze!…

An Ugly Profile

As every man, woman and child over the age of six living in the United States must be all too aware, the latest courtroom drama to grip the nation has been the trial of George Zimmerman, which came to its conclusion this past weekend. Unlike many of our previous “trials of the century”, which usually feature lurid sexual misconduct, child murder, or the involvement of a celebrity, the Zimmerman trial focused attention on some of the most troubling fissures that threaten to fracture American society, including racial bias, the prevalence of handguns, and our well-earned paranoia regarding violent crime.

A prominent issue in the Zimmerman case was profiling, specifically racial profiling. But profiling can take many forms, and as a disabled person this aspect really struck home. More on this a bit later, but for the sake of international readers who may not know the specifics of the case, please allow me to provide a quick summary.

In February 2012, black teenager Trayvon Martin was walking back to his father’s fiancé’s townhouse at about 7 PM in the evening, after a trip to a nearby convenience store. The Florida community he was walking through had recently been the scene of several burglaries and home invasions. A white resident of the community, George Zimmerman, a volunteer in the neighborhood’s community watch program, saw Martin walking in the dark through a light drizzle. Mr. Zimmerman, who spotted Martin from his car, thought the recently turned 17-year-old looked suspicious and called local police dispatchers, who told him police were on their way and advised him not to follow Martin on foot, advice which Mr. Zimmerman, who was armed with a concealed handgun, ignored.

After following Martin for several minutes, an altercation broke out between the two subjects, during which Mr. Zimmerman suffered a broken nose and abrasions on the back of his head. According to most accounts of the struggle, including Mr. Zimmerman’s, Martin wound up straddling Zimmerman on the ground and was getting the better of the fight. Zimmerman said that at this point Martin saw the gun holstered on Zimmerman’s hip, and told Zimmerman that he was going to kill him. Zimmerman then unholstered his weapon and shot Martin at point-blank range through the heart. Trayvon Martin died within minutes.

Initially, local police declined to arrest George Zimmerman, saying that his actions were justified on the grounds of self-defense. After the case reached public attention and generated a national outcry, Zimmerman was arrested and charged with second-degree murder. After a trial that lasted approximately 3 weeks, he was found not guilty, a verdict that has ignited heated debate and public protests throughout the nation.

Naturally, I have strong opinions about the Zimmerman case, but as I’ve largely tried to keep politics out of this blog, I’ll refrain from airing my opinions here. Instead, as I mentioned previously, I’d like to use this tragic incident as a catalyst to discuss the issue of profiling, the practice of making assumptions about a person’s character, intelligence, or intentions based solely on their appearance. Perhaps the only thing that seems certain about this case is that Zimmerman profiled Martin, assuming he was “up to no good” based solely on the youth’s appearance. Tragically, it turned out those assumptions were wrong, and ultimately resulted in the death of a 17-year-old who was simply in the wrong place at the wrong time. Or, more correctly, in the right place at the wrong time.

Why discuss this on a blog devoted to issues associated with multiple sclerosis and disability? People with MS and other disabling illnesses who show the physical effects of their disease often find themselves the subjects of profiling, whether they walk unsteadily, use canes or walkers, or are reliant on wheelchairs. Assumptions are often made by members of the general public based solely on the appearance of the afflicted, and those assumptions can often multiply the pain and suffering caused by the disease itself.

There has long been stigma attached to physical disability; the severity of this stigma varies from culture to culture but certainly persists to this day even in more enlightened societies. I know many MSers with relatively mild disease who struggle mightily to keep their illness a secret in the workplace, for fear that knowledge of their ailment might derail their careers or even get them fired. Patients with more apparent manifestations of the MS, such as balance and gait issues, have found themselves accused of alcoholism or illicit drug use. Those of us who find ourselves in wheelchairs often also find ourselves ignored by the population at large, subject to ignorant or condescending comments, and sometimes even treated as complete imbeciles. Folks whose disease affects their speech are often automatically assumed to be suffering from mental retardation, the notion that a perfectly fine mind may be hidden behind their inability to enunciate never even occurring to many in the healthy population.

How can I be so sure of all of this? The answer is simple, and embarrassing. Back in my healthy days I was sometimes guilty of just such profiling, unconsciously making assumptions about the disabled based on preconceived notions that had no basis in reality. I clearly remember seething at the wheelchair reliant person who had the audacity to hold up my commute to work while the driver of the public bus I was on took the time to operate the vehicle’s wheelchair lift. How dare they travel during rush hour, didn’t they know that normal people need to get to work! Looking back, I cringe at the memory of my sometimes dumbing down my speech in the presence of people with physical disabilities, as if somebody possessed with faulty limbs was also automatically possessed with a deficient brain. Turns out the one with the deficient brain was me.

Even now, when I’m all too well versed in the trials and tribulations of the disabled, I sometimes find myself falling victim to my own subconscious preconceptions. A few years back I met a man who was active on one of the online MS forums in which I participate. In our written give-and-take on the Internet, I knew him to have a keen intellect – astute, sharp, and witty. When I finally met him in person at a large MS symposium I could barely disguise my shock when I found he could barely get a word out, his speech halting and slurred. Despite the fact that I knew that this man had a fine mind, I automatically found myself simplifying my vocabulary and talking in a louder voice, so strong and ingrained were my mistaken inclinations. I’m ashamed to admit that I was so disquieted by the situation that I cut our interaction short, behaving in a way I regret to this day.

George Zimmerman’s profiling of Trayvon Martin ultimately resulted in an innocent teenage boy’s death, an outcome that all can agree was tragic, whether or not they believe the jury’s verdict to be just. Though the profiling experienced by the sick and disabled isn’t likely to result in physical death, the injuries inflicted to sense of self and ego can at times seem more hurtful than a physical blow. The emotional maelstrom experienced by patients dealing with chronic disabling diseases is and of itself a difficult storm to weather, and the added indignities that are sometimes heaped upon them by an indifferent and ignorant public can multiply the emotional distress of such illnesses exponentially.

Unfortunately, there are no easy answers when it comes to eradicating the problem of profiling, whether that profiling is based on race, gender, religion, or physical condition. As my own experiences illustrate, perhaps the first action we should take to eliminate the poisonous practice of profiling is to look within. An open mind and an open heart are tremendous benefits not only to the person who possesses them, but to all within their sphere of influence as well.

Trayvon Martin, RIP.

It's Not Easy Being Green

The Seven Vices - Envy, by Giotto (1306, Fresco, 120 x 55 cm, Cappella degli Scrovegni (Arena Chapel), Padua, Italy) (Photo credit: Wikipedia)

Envy. I’m not proud of it, but I confess that I find myself consumed with this ugly emotion with increasing frequency, in direct proportion with the progression of my disease and my increasing physical disabilities. Of the seven deadly sins, envy is certainly amongst the most distasteful, right up there with anger, greed, and pride, all such unpleasant and unlovable traits. Lust, gluttony, and sloth, on the other hand, while certainly not foundations upon which to build a thriving long-term existence, can be an awful lot of fun in the right doses. I’ve always felt that the occasional pinch of decadence was a requisite ingredient in the recipe for a life worth living.

But I digress, back to envy, that entirely negative and frustrating beast. As much as I try not to succumb, as much as I try to maintain the emotional control which is so essential to sustaining psychological equilibrium in the face of progressively debilitating disease, envy often finds the cracks in my defenses and breaches my emotional levees, and when it does the sentiment inundates my being with its toxic sway. As I roll through the teeming city streets or the more gentle confines of Central Park with my backside firmly planted in a wheelchair, passing tens and hundreds and thousands of the healthy masses, I find it at times impossible to not yield to waves of envy, covetous of the most humble abilities on full display and taken entirely for granted by those around me, mundane everyday actions that nevertheless taunt me like a poke in the eye – simple miracles like to two working legs and two working hands, fingers breathlessly nimble, and senses tingling and undulled, all utilized with nary a thought or conscious desire. You don’t know what you’ve got till it’s gone, they say, and, oh, the envy that can be risen by the sight of those whose terrific good fortune allows them to maintain their blissful ignorance.

At times it feels as if my illness is turning me into a breed apart, and despite my attempts at denial, I suppose such a transformation is inevitable. One of these things is not like the others, and that one is me. Yes, of course I’m still human, a sentient, feeling being, and this binds me to the whole of humanity, but in physical terms I am inexorably drifting further and further from the main. Some parts of the world are now quite literally shut off to me, a simple 6 inch high step as impassable a hurdle as the ramparts of a medieval castle. Food that cannot be easily consumed with one hand holding a fork or spoon needn’t be edible if placed in front of me unless I am free to go caveman and pick up that chicken breast or ribeye and tear away at it with my teeth, actions that are generally frowned upon in most fine dining establishments. Clothing with buttons, zippers, or even snaps are as useful to me as a Jell-O hat, and don’t even get me started on shoelaces.

But it’s generally not my frustrations with the obstacles of the physical world that engender aching pangs of envy. Rather, it’s observing the modest joys achieved without thought by the blessed masses that provoke a cascade of jealousy: the leisurely stroll or the hurried stride, the gesticulations that say what words cannot, the effortless grace of a lovers embrace. On these my gaze falls longingly, as remembrances of my own healthy long-ago life, so divorced from the one I lead now, claw their way out of the carefully constructed lockboxes in my mind to disrupt the ordered reality I try so hard to consciously maintain.

I envy the young for their vibrantly radiant energy; even sitting still they shimmer and glow. All that beaming vigor, if only I could siphon off just a drop from each I’d be dancing in no time. I envy the old – even those who move with obvious effort – for their decades lived without suffering a life altering physical catastrophe and for their active old age, a stage of life I will likely never know. I sit amazed – and, I must admit, in weaker moments aghast – at how many octogenarians are in far better shape than I. Let them all live long and prosper, the young and the old alike, but their very existence sometimes seems designed solely to mock my own. There are days when being out in the world can be invigorating, when I can lose myself in the kaleidoscopic swirl of humanity, if even just for a few moments. There are other times, though, that the very thought of leaving my sanctum is simply too much to bear, when solitude is the only companion I can stomach.

In those down times, though, I try to remind myself that even in my current debilitated state there are those worse off than I, some sharing the disease that afflicts me, who might look to me with envy. And there are others, perhaps those racked with terminal disease or ruinous injury, who could very well be covetous of the plight of the poor souls who envy me. The ladder of despair is long, and those clinging desperately to each rung can't help but occasionally glance upwards and stare jealously at those just above them.

I vacillate between trying my damnedest to suppress the urge to direct my wheelchair full bore into the shin bones of the able bodied and wanting to roll up and beseech them to fully embrace the power and majesty of their unsullied health. “Do you know how lucky you are?”, I want to shout at them, especially those who look sad or sullen. “Did you lose your job, some money on the stock market, a lover or spouse? Are you worried about the state of the world or suffering from some existential angst? How wonderful! Now you can take a night to feel the hurt, and then wake up tomorrow and use that fully functioning body and disease-free brain to start anew, to find a better job or make more money or discover some wonderful new person or decide to do something constructive to improve your lot in the world and maybe even help your fellow man! With your health intact you hold the power to reinvent yourself the moment you muster the will to do so. Never forget that you’re only as stuck or lonely or despondent as you want or allow yourself to be, the past is nothing more than a quickly fading photograph, and whatever emotional baggage you’re carrying around can be released as soon as you decide to stop letting it drag you down. The only reality is that which you create, and the future offers nothing but boundless opportunities as long as you allow yourself to be open to them! Choose happiness, since you’ll never get a refund on the days you spend miserable, and as long as you’re healthy the world and all of its glories are there for the taking!”

Yes, I’d sound like some gimpified late-night TV self-help shyster, but every word is true. I suppose that’s what I find so truly galling about seeing all of these magically healthy people; they bring into shattering focus the fact that I wasted so much damn time on what ultimately turned out to be trivialities when I was one of them. Here comes a cliché: if I only knew then what I know now, but how true, how goddamned true. If I could just go back for five minutes and give myself a good swift kick in the ass! I’d shout at the younger healthy me, “Stop stoking the embers of that broken heart, get off that couch, and call that sexy blonde who’s been flirting with you for the last year and a half! Don’t let fear dictate the day! Quit that soul sucking job you hate and put your talents to use chasing your dreams! Go learn how to scuba dive, or skydive, or do any of the million things you’ve always wanted to do but never got around to actually doing! Because time is finite, and there just may come a day in the future when you will no longer have the luxury of making such choices. Don’t want to scare the crap out of you, buddy, but let’s just say you’d better get cracking…”

As I write this, I realize that all of the above advice, all of my imaginary admonitions to the healthy and to the younger me, apply with a few modifications just as well to who I am now and my current circumstances. Yes, I have disease imposed restrictions, and they suck. But I still have the capacity to find joy, I can still pursue my pleasures – albeit from a more limited menu – and the world is still brimming with wonder. Though I am physically worse off than I was a year ago, I can still get out and about, can still take photographs, can still write essays that I hope resonate with folks in similar situations. It may take me longer to do these things, and I may be forced to curtail the scope of my activities, but I’d best do what I can do now for as long as I can do it because perhaps the only thing I know for sure is that progressive diseases progress, and I have a progressive disease. I suppose that makes my future more uncertain than most, but everybody is traveling down a path made up of nothing but blind curves.

I know my feelings of envy are shared by at least a few of my fellow MSers, as the topic has come up in quite a number of conversations I’ve had recently with some of my MS friends. As with all negative emotions, envy cannot be eradicated, for how can one in a wheelchair not be envious of those walking so effortlessly all around them? The key is to acknowledge the envy and then do your best to let it go, for its toxicity is only a fleeting poison unless you allow yourself to wallow and dwell, using envy’s sharp edge to administer distressing self-inflicted emotional wounds. The disease itself does enough damage all by itself, it certainly doesn’t need the help of negative emotions run amok.

So I guess I have some work to do. As I’ve noted before on these pages, one of the lessons imparted by MS is the value of kindness, and especially that of kindness to self. On days when the outside world seems too daunting a place to visit, it’s okay to relish the safety of your cocoon. But the outside world isn’t going anywhere, and those of us faced with the ravages of progressive debilitating illness know all too well how precious a commodity is time. Once each day is gone it’s not coming back, and despite the restrictions we face, the paralysis and pain and emotional distress, as long as nothing suddenly calamitous occurs only we can determine whether any particular day is good or bad, fruitful or wasted. There is still life to be lived, even if it’s not a life you could have ever envisioned. Fuck envy and fuck MS, each on their own is ugly, and the combination is wretched. Each new day belongs to nothing and no one but me, so who better to put into action the wisdom and perspective so harshly imparted by this dread disease?

Bits and Pieces: Long Time, No See Edition

Well, it’s time once again for another Bits and Pieces post, featuring a collection of MS related news items that have made their way from my eyeballs to my brain pan over the last couple of months. It’s been a while since I’ve done a Bits and Pieces post, the reason for which I can’t really think of at the moment. As some long time readers have noticed, I’m not posting quite as frequently as I used to, but have no fears, my disease hasn’t taken a dramatic turn for the worse, nor have I fallen off the face of the earth.

Isn’t that a stupid expression, “fallen off the face of the earth”? I’m pretty sure nothing has ever fallen off the face of the earth, as leaving the face of the earth for even a split second takes a fair bit of exertion, requiring the likes of jumping, skipping, hopping, or some other form of vertical derring-do. These days, given the effects of my creeping paralysis, I’m far more likely to be partaking in some derring-don’t than derring-do. MS turns derring-do into derring-doo-doo. Aren’t you glad that the disease hasn’t affected my level of maturity. You’re only young once, but you can be immature for the rest of your life…

Sure, the disease continues to do its demented dance, the crippled fandango, and these days I’m more inclined to go for quality over quantity when it comes to most things. Except, of course, zombie movies. After doing some extensive privately funded research, I’ve discovered that sometimes “bad” zombie movies can be more enjoyable than “good” zombie movies, a realization that has thrown my entire concept of “bad” and good” into crisis. Quite the philosophical quandary, and one that might only be resolved by watching more zombie movies.

I know, many of you are suddenly thinking “Damn it, Wheelchair Kamikaze, now I have a yen to watch a zombie movie, and I have no way of knowing what zombie movies get the Wheelchair Kamikaze stamp of approval!” Have no fear, I couldn’t in good conscience leave you jonesing for a zombie flick without making a recommendation, so here’s a good one: Dead Snow (click here), a Norwegian take on the genre, in which some snow sport loving Norwegian students face off against a regiment of long dead Nazi SS soldiers over a lost hoard of World War II gold. What’s not to like?

Okay, when I started writing this I had no idea I’d veer off into zombie territory, which on its face would seem to have nothing to do with MS. But MS, with its delightful potpourri of spasticity, paralysis, and brain fog, can certainly make one feel like a zombie, and on more than a few days I’m pretty sure the average zombie could beat me in a race to get a physical copy of and then complete the New York Times crossword puzzle. Hey, now there’s an idea for a screenplay, a zombie movie of my very own! Somebody get me in touch with Spielberg, this idea has “green light” written all over it. We can call it Dead Tired.

Okay, with visions of zombies playing word games dancing in your head, I present my latest collection of MS news and notions…

♦ Let’s start with some of the latest news in the world of MS drugs. There is an increasing awareness among MS researchers and clinicians that early treatment is very important in potentially lessening the severity of a patient’s multiple sclerosis (click here). Researchers now talk of a “window of opportunity”, early on in the relapsing remitting disease process, when treatment can make a big difference in the aggressiveness and destructiveness of the disease. Recent advances in MRI imaging, along with physical studies of MS brains (through biopsy or postmortem examination) have revealed that neurons suffer damage far earlier in the disease process than was previously thought. Once neurons are damaged, they stay damaged, so early intervention to minimize that damage may prove to be vital. There is quite a lot of disparaging of the available MS treatments on MS Internet forums and Facebook pages, much of it deserved, but there is some compelling science to back the notion of early treatment, such as this study (click here) which showed a significant impact on mortality rates between treated and untreated patients over the long term (21 years). In other words, this retrospective study found that patients treated with interferon lived longer than untreated patients, a result which cuts right to the bottom line, don’t you think?

Lost in all the hubbub over the introduction of Tecfidera was MS drug giant Biogen’s application for FDA approval for its new interferon drug Plegridy (click here), which is basically a reworked version of Avonex that would require patients to inject themselves only once every two weeks. Trials showed its effectiveness in reducing relapse rates and enhancing lesions to be in line with those of the other interferon drugs (Betaseron, Avonex, and Rebif). The interferon drugs don’t benefit all RRMS patients (approximately 1/3 of patients respond to interferon treatment), come with their own drawbacks (flulike symptoms), and there is ongoing debate whether they impede disease progression, but if you feel that they do work for you and you’re not inclined to rock the boat, then, once approved, Plegridy might allow you to cut down on the number of injections you have to give yourself without switching to an entirely new class of drug.

On the always interesting (to put it mildly) Tysabri front, the good folks at the Multiple Sclerosis Research blog (click here), which is compiled by some world-class MS researchers in London, have put together an easy to understand slideshow explaining the latest on Tysabri’s effectiveness, and the risk of PML for different subsets of patients (click here). If you are currently on the drug, or considering going on it, this is really must-read information. In a nutshell, it reveals that one in three Tysabri patients appear to be free of MS disease activity (that’s the good news), but that the PML rate is as high as 1 in 94 for JC positive patients who had previously been on immunosuppressive therapies and have been on Tysabri for more than two years (that’s the bad news). In related news, a just-released study raises concerns that the blood test given to Tysabri patients to determine whether or not they are JC virus positive may result in a high number of false negatives (click here). The JC virus is the bug that causes PML, and the risk of developing PML while on Tysabri for JC negative patients is almost nonexistent, but increases exponentially for patients who test JC positive. Therefore, the accuracy of the test for JC virus is imperative for correctly assessing the PML risk of individual patients. Let’s hope the scientists get their shit together on this one, and soon.

♦ The nation of Iran seems to be experiencing an epidemic of multiple sclerosis, the rate of those affected with the disease increasing almost sevenfold between 1989 and 2005 (click here). If the disease continues its rapid spread, one source estimates that in 10 years every Iranian family will have one member suffering from multiple sclerosis (click here). The cause of this dramatic spike in MS cases is a mystery. One theory is that since the country’s Islamic Revolution in 1979, adherence to strict Islamic law has mandated that women cover their heads and bodies, limiting their exposure to sunlight and thus lowering their levels of vitamin D. Low levels of vitamin D are increasingly being linked to MS, so this theory may have some merit. However, other countries that have no such clothing mandates, such as southern Italy, Norway, and Japan are also experiencing marked increases in MS, and we are also seeing alarmingly high rates of MS and other neurologic diseases in US military personnel returning from the Middle East. Likely, a mix of environmental factors is at work.

Iranian researchers are setting their sights on MS, and one study of 400 patients revealed that smoking increases the risk of RRMS transitioning to SPMS (click here). Yet another reason to stop smoking, if you already haven’t. As a former smoker, I know how difficult it can be to give up the coffin nails, as I used to love the damned things. But MS and smoking definitely don’t mix, and besides, current laws and restrictions have made smoking a tremendous pain in the ass. Here in NYC, smoking is banned in most buildings and all bars and restaurants, and even in Central Park. The 49 story high-rise building I live in is a non-smoking zone. To top it all off, in New York cigarettes cost more than seven dollars a pack, so if they don’t kill you they’ll soon force you into bankruptcy. Really though, was there ever a more delectable pleasure than sitting in a bar with friends, getting sloshed while smoking your brains out? Those were the days my friend, we thought they'd never end, but then everyone got cancer, emphysema, and multiple sclerosis.

According to a newspaper in Azerbaijan, Iranian scientists hard at work on the MS problem have come up with a cure, called (I kid you not) MS Nut (click here), “an herbal substance that can completely cure multiple sclerosis”. Color me skeptical. Also color me jealous, because I always thought of myself as the “MS Nut”, and now the Iranians have stolen the moniker of my alter ego. Crap.

♦ Speaking of MS nuts, a Texas photographer discovered a collection of preserved human brains at the University of Texas at Austin, taken from patients who died at the former Texas State Lunatic Asylum between the 1950s and the 1980s (click here). Labels on the jars revealed some of the conditions for which the brains’ former owners had been committed to the asylum, among which were Lou Gehrig’s disease and, you guessed it, multiple sclerosis. At least we can be thankful that they’re no longer locking up MS patients in lunatic asylums, but I’m not taking any chances. If I see any sinister looking men in white coats heading my way, I’ll be Wheelchair Kamikazeing it right the hell out of there…

♦ And now for one of my favorite topics, adventures in asinine MS research. One such study, evaluating the risk factors contributing to falls in PwMS, followed 148 patients who had mobility issues but were still ambulatory (EDSS 3.5-6.5) over a three-month period (click here). The findings? “Continence issues, previous falls history and use of prescribed medications were each associated with increased risk of being a "faller". Holy moly, this changes everything! You mean people afflicted with a crippling illness who have serious mobility issues, have taken a few tumbles in the past, ingest copious amounts of prescription drugs that can cause extreme fatigue and balance issues, and at times suddenly find themselves about to crap and/or piss in their pants might be at risk of face planting as they desperately struggle to make their way to a toilet? I’m shocked!

I propose that as a reward for this massive contribution to science, the investigators involved in this study be forced to experience some of what their research subjects go through on a daily basis. Let’s gather our esteemed researchers in a room at least 50 yards from the nearest lavatory, attach lead weights to their legs, tie their shoelaces together, and make them each drink a gallon of water as they swallow large handfuls of laxatives. As soon as our scientists turned research subjects start feeling the need to “go”, we’ll smack them in their heads with a medium-size frying pan to simulate the effects of an MS pharmaceutical cocktail. I’m no expert, but I predict we might just witness a few falls, along with some other, er, less pleasant phenomena. I’m positive a Nobel Prize awaits…

♦ Okay, now that we’ve got science is out of the way, let’s turn to the arts. Artist Veronica Wilson, who works in glass, has been an email friend of mine for a few years now. In addition to writing very entertaining emails, Veronica creates fabulous stained-glass art pieces even as multiple sclerosis puts a crimp in her mobility and now impacts the use of her hands. Veronica is a member of the Frog Valley Artisans (click here), and lives and works in Berkeley Springs, West Virginia. Here’s a very nicely done short video profile of Veronica and her work…


Well, that’s it for this edition of Bits and Pieces. I have some zombie friends waiting for me on my DVR…

Conquering Fears Through Photography

Well, it’s two weeks short of a year since I last posted new photos to the Wheelchair Kamikaze photo gallery. A long time between photo posts, so long, in fact, that relatively new readers might not even be aware of the specifics behind the WK photo gallery. For those who don’t know the photo gallery “back story”, here's a quick summation.

Back in my healthy days I was an avid amateur photographer, always snapping away with a variety of cameras. When I got sick my right side quickly weakened, making shooting photographs (along with a whole bunch of other things) increasingly difficult. I tried to keep at it, but within a few years, much to my great frustration, I was forced to set my cameras aside as shooting with them simply became too difficult, and quite frankly I didn’t have the stomach to come up with workarounds.

Several years passed with my never touching a camera, though I missed photography intensely, until my creeping paralysis crept to the point that my mobility needs required the assistance of a mechanical monster, my wheelchair. Once the beast became part of the family, my wife started bugging me to figure out a way to attach a camera to the thing, so that I could use my good hand to make photographs using a wheelchair mounted camera. Being an obstinate putz I steadfastly resisted her suggestions, although she did manage to wheedle out of me some ideas of how I might go about setting up such a rig. My wife's Christmas present to me that year was, as you might’ve guessed, all the components needed to make a wheelchair mounted camera a reality: a new digital camera with a flip out viewing screen and a little tripod with flexible legs that I could wrap securely around the arm of the wheelchair (to see the setup, click here. Though the gear has changed in the intervening years, the basic setup remains the same.)

Soon enough I was back in business, zooming around the city (mostly Central Park), a half paralyzed shutterbug on wheels. The resulting photos turned out surprisingly well, and in addition to shooting stills I also made some videos. Thus, the Wheelchair Kamikaze blog was born, more a place to showcase my photos and videos than the repository of written rants and raves that it has evolved into over the years.

So, why haven’t I posted any new photos in almost a year? The short answer is that I haven’t been doing much in the photographic department these last 12 months. The longer answer is that I haven't been doing much in the photographic department these last 12 months because my disease has continued to progress (as progressive diseases are wont to do), and my “good” left side is no longer so terrific, forcing me to question whether I could still manage certain activities that I had previously taken for granted.

For the first eight or so years after my diagnosis, my left side really wasn’t effected by the disease all that much, but the last year and a half or so have seen it noticeably and increasingly diminished. As it is with all of the insults dished out by the disease, the physical impacts of these new challenges have been accompanied by psychological hurdles as well. If I’m honest with myself the truth is that I haven’t shot any photos, or even processed a bunch that I shot last summer, because I was afraid to find out that I could no longer do so. Manipulating the wheelchair mounted camera takes a good bit of fiddling with dials and buttons and such, and processing photos through Photoshop, even for the minimal amount of image enhancements that I usually do, requires a fair amount of precise mouse work. Rather than try and fail, and then have to deal with the wreckage of that unpleasant new reality, I semi-consciously decided to not try at all, and thus avoid the situation altogether. In short, fear of failure took the wind out of my photographic sails, compounding the physical limitations imposed by the disease with some of my own making.

Lately, though, I’ve been feeling that old familiar yen, at least in part spurred on by the nicer weather as winter turned to spring. I’ve also grown more resigned to the fact that my left side is getting increasingly wonky, and sick of capitulating to the fear that I might no longer be able to do something (photography) that is so tied into my sense of self. The disease is crippling enough, and I resolved that I wouldn’t allow my fears to cripple me further. So, I grudgingly opened up Photoshop and started working on some of the photos that had been occupying my hard drive untouched for the last year or so.

Lo and behold, I found that I can still put Photoshop through its paces, certainly not as quickly and efficiently as before, and only for a couple of hours at a time before my hand becomes unresponsive enough to start freaking me out, but, dammit, once I shook the rust off the results weren’t all that bad. Spurred on by this minor triumph, I bit the bullet and took the camera on a couple of sojourns to Central Park, where I discovered that I can still manage the required twisting and pushing of camera and lens controls. Not for the unlimited hours upon hours as I had in the past, but I was able to shoot almost nonstop for about two hours, long enough to make it a very pleasant and productive afternoon. Sure, my arm and hand felt made of flimsy rubber bands on the way home, but the victorious feeling I felt more than made up for the increased danger I was to pedestrians, since my ability to manipulate the wheelchair joystick was noticeably diminished. I managed to make it home without taking out anybody’s shins or kneecaps, and not only had I been able to take some pretty good photos, but I’d stood up to a big fear and kicked it in the nuts.

So, I now know that I can still shoot photos and run them through Photoshop, at least for today and tomorrow, and for fuck knows how much longer. I’ll just have to take it as it comes. I’ve got some “outside the box” treatment options yet to try, some of which I’ve already written about on this blog. Given the state of the world, with lunatics shooting up parades, movie theaters, and grammar schools, with weather patterns seemingly more severe and deadly by the week, and with a geopolitical landscape that appears increasingly on the brink of widespread violent chaos, it could be that MS is the least of my worries. As somebody much wiser than I once said, “life is uncertain, eat dessert first.”

With that, I present to you my latest batch of photos, long overdue. About half were taken recently, but all have been processed within the last month or so. Most were taken with my wheelchair mounted camera, but a few were shot with an iPhone with a close-up lens attached, including the photos of the dragonfly and the ant in the flower. Though it’s a little tricky, I can handle the iPhone camera with my one clumsy hand, and I’m always surprised at the capabilities of that little device.

I’d welcome all feedback on the photos, positive and negative. Which ones do you like, and which ones suck? Please don’t hold back because of my “conquering fear” thing. Negative feedback is just as helpful as positive, maybe more so. Your honesty will be much appreciated…

Click on the thumbnail image for a larger version.

Tecfidera (BG 12) And PML

If you are currently taking Tecfidera, please take part in my Tecfidera patient poll (click here).

Over the last month or so, there’s been a rising crescendo of concern among MS patients about the possible link between the newly approved oral MS drug Tecfidera (formally known as BG 12) and the deadly brain infection PML (Progressive Multifocal Leukoencephalopathy). I’ve received many anxious emails on the subject, and Internet MS forums and Facebook pages are rife with alarm over the perceived recent spate of bad Tecfidera news.

As long-time readers of this blog know, I’m not a big fan of Big Pharma, to say the least. In fact, I hold them in regard only slightly higher than the New York Yankees, who I am convinced are the essence of evil incarnate on earth. But I am also not a big fan of fear mongering, and when reviewed objectively, the facts behind the alleged link between Tecfidera and PML simply don’t warrant the level of anxiety recent reports have fomented. In fact, it seems that rivalries in the Big Pharma sandbox may be playing a role in all the hyperbole, but more on that later.

As most MSer are aware, PML is a brain infection that most often occurs in patients experiencing severe immunosuppression, such as those suffering from HIV/AIDS. In the context of MS, the infection is most closely linked to the drug Tysabri, whose mechanism of action often reduces immune system surveillance of the central nervous system quite drastically, opening up the possibility of opportunistic infection by the JC virus, which causes PML. Of course, it is this same mechanism of action that makes Tysabri so effective (the latest figures indicate that Tysabri therapy results in an 81% reduction in relapses, a 64% reduction in disease progression, and one in three RRMS patients appear to be free of disease activity for a prolonged period of time – click here for an exhaustive breakdown of Tysabri, its effectiveness, and PML). Despite Tysabri’s efficacy, PML is a real concern for those taking it, as 347 Tysabri patients have contracted the potentially deadly infection (approximately 120,000 patients are currently taking the drug).

Recently, it was revealed that four cases of PML occurred in German patients taking the psoriasis drug Fumaderm, from which Tecfidera was derived. It’s important to note that although the two drugs are similar, they are not identical. Fumaderm is a compound of dimethyl fumarate and three other related chemicals. Tecfidera is made only of dimethyl fumarate. Fumaderm has been used to treat psoriasis in Germany and some other European countries for about 20 years, with much success (click here), and is generally considered to have a benign side effect profile.

Both Tecfidera and Fumaderm do have immunosuppressive properties. In Tecfidera’s phase 3 DEFINE trial, it was found that the drug reduced lymphocyte counts in treated patients by about 28%. Lymphocytes are immune system cells whose mission it is to combat infection. These same cells are implicated in the MS disease process, and it is this depressive effect on lymphocytes that could well account for Tecfidera’s abity to fight the symptoms of MS. However, 4% of trial subjects (1 in 25) experienced a more severe form of lymphopenia (the medical name for a reduction in lymphocyte counts) which could make them vulnerable to opportunistic infections, requiring them to cease taking the drug. Recovery of lymphocyte counts after cessation of Tecfidera should be quite robust, based on  years of experience with Fumaderm. (Click here for the entire DEFINE trial report)

A look at the four Fumaderm PML cases is quite revealing (click here.-site requires free membership, well worth it). In one case, the patient was not actually taking Fumaderm, but a version of the drug made by a compounding pharmacy which included a chemical not found in Fumaderm, which could have resulted in a formulation more potent or otherwise problematic than the factory produced drug. Another patient had sarcoidosis, a potentially deadly autoimmune disease, and had previously been treated with powerful immunosuppressive drugs. A third Fumaderm PML patient had cancer, and had been treated with Efalizumab, a drug in the same family as Tysabri that has a known risk of PML.

Two of the Fumaderm PML patients had severely depressed lymphocyte counts for two and five years respectively before developing PML. In Germany, the prescribing guidelines for Fumaderm require that patients get blood tests done to check cell counts every month for the first six months they are on the drug, and then every two months thereafter to check for depleted lymphocyte counts. If patients are found to have significant lymphopenia, the guidelines call for dosages to be adjusted or the drug stopped altogether. Apparently, this regimen was not followed in these two cases, as the patients’ lymphopenia was somehow allowed to persist until they developed PML. It’s quite likely that had the lymphopenia been addressed far earlier, neither patient would have contracted PML.

So, what should concerned patients take away from all of this? Tecfidera does depress white blood cell counts, and this effect quite likely plays a large role in its therapeutic value. However, 4% of treated patients can be expected to experience a more severe drop in lymphocyte counts, which could open them up to opportunistic infections like PML if left untreated for an extended period of time. That’s the bad news. The good news is that this drop in cell counts is easily detected by standard blood tests. Once such a decrease is detected, the drug can be stopped and any potential danger averted.

For reasons that I can’t explain, the FDA guidelines for Tecfidera only require blood tests done before treatment is initiated and then once yearly for the duration of treatment. Based on the Tecfidera trial data, as well as the experience gathered from the 20 year history of Fumaderm use in Europe, the requirement of just one blood test a year seems misguided. I’m currently waiting for my insurance company to give me the okay to start Tecfidera, and my neurologist is requiring blood tests every other month for all of his Tecfidera patients. As noted above, two of the Fumaderm PML patients had severely depressed lymphocyte counts for two and five years, so blood testing every other month should provide more than ample opportunity to catch any potential problems well before they become very real concerns.

I am by no means a doctor, just a well educated patient, but I would strongly advise all patients starting Tecfidera to insist that the neuro’s test their blood for lymphocyte counts at least every other month. Doing so should largely eliminate any chance of PML and set many a mind at ease. Despite its similarities to its cousin Fumaderm, Tecfidera is a brand-new drug, and although all signs point to it being a very safe medicine, I think it prudent to err on the side of caution. If your neuro resists, print out the DEFINE trial results and show him/her the data on lymphopenia, which can be found on the ninth page of the study. I always urge patients to educate themselves and to self advocate. Here’s the perfect opportunity to do both.

In short, all of the recent concerns about Tecfidera and PML appear to be hugely overblown. To put things in context, Tysabri has seen 347 cases of PML in approximately 260,000 patient hours of drug exposure. Fumaderm has seen four cases of PML in approximately 180,000 hours of drug exposure. It’s been noted that Fumaderm is not generally given as a long-term therapy. However, at least one study researched psoriasis patients who have taken the drug for up to 14 years, with no apparent added risk associated with long-term use (click here). Based on the DEFINE trial results, the large majority of Tecfidera patients, 96%, should experience no problems whatsoever with lymphopenia. Regular blood testing should ensure that patients who do experience clinically significant drops in lymphocyte counts avoid any potential problems.

The fact that Tecfidera is an oral drug that appears to be almost twice as effective as the injectable CRAB drugs, and may have neuroprotective properties to boot, should make it a very valuable weapon in the arsenal against MS. Like all of the current MS drugs, it is not a cure, but it will hopefully bring many patients some significant relief from this terrible disease. Using all of my self-control, I'll refrain from going on my usual rant about how the focus of pharmaceutically funded MS research on immune system suppression and modulation does absolutely nothing whatsoever in the effort to find a cure for the disease, but it doesn't. And that sucks. There, I said it. I couldn't help myself.

Oh, I almost forgot. About those shenanigans in the Big Pharma sandbox: it appears that the reports of potential problems with Tecfidera were first brought to the attention of the FDA and the general public by Teva Pharmaceuticals, makers of Copaxone, one of the CRAB drugs that are currently considered the first-line drugs given to new MS patients (click here). Guess which MS drugs are most threatened by the potential success of Tecfidera? Yup, the CRABs, of which Copaxone is currently the most prescribed. With Copaxone sales of $4 billion (yes, billion) in 2012, Teva has about 4 billion reasons to try to delay Tecfidera’s entry into the market, or to stir up concern among the drug’s potential consumers. Not that I would ever accuse any Big Pharma players of partaking in such underhanded behavior. Gee, I sure hope the Yankees win the World Series…

Not.

(For a comprehensive overview of the how's and why's of Tecfidera, please see my previous post on the topic, by clicking here)

Can Anti-HIV Drugs Stop MS?

Animation of the structure of a section of DNA. The bases lie horizontally between the two spiraling strands. (Photo credit: Wikipedia)

(Readers who receive these posts via email are advised that this essay contains a video, which cannot be viewed in the email version. Please go to the Wheelchair Kamikaze website (click here) to view the video…)

I imagine the above headline might have furrowed a few eyebrows and crinkled some foreheads when first viewed by readers. HIV (the virus that causes AIDS) has nothing to do with MS, does it? Has Marc finally lost his last marble? Don’t MS patients have enough to worry about without having to contemplate AIDS?

Yes, MS patients certainly do have enough to worry about, and no, the virus that causes AIDS has nothing to do with multiple sclerosis. HIV, though, is a retrovirus, and, strange as it might sound, there is increasing evidence that ancient retroviruses that have become incorporated into the human genome through millions of years of evolution may play a key role in the MS disease process. This might seem like something out of a science fiction novel, but this discovery of prehistoric viral material in human DNA has the potential to completely change the way we understand and treat MS and other diseases (including cancer), and could potentially lead to – dare I say it – a cure.

There are currently two clinical trials underway attempting to shut down these ancient retroviruses in MS patients, and one of them uses a currently available anti-HIV drug. More on these trials a bit later, but first a little background, starting with a quick overview of virology. I know the mere prospect of “a quick overview of virology” is apt to make eyes glaze over throughout the Internet, but please bear with me, I’ll try to keep it as painless as possible.

We’re all familiar with viruses, the little buggers that cause influenza, the common cold, and a many other diseases. Of course, bacteria also cause diseases, but viruses and bacteria, though both infectious agents, are very different beasties. Bacteria are living organisms, and when someone suffers a bacterial infection they can usually be treated with antibiotics, drugs which kill the guilty bacteria and thereby cure the patient. Antibiotics have no effect on viruses, though, because viruses aren’t alive, and therefore can’t be killed. Viruses are kind of like the zombies of the pathogen world, undead infectious agents that exist only to infect living things. The fact that viruses are “undead” is what makes viral diseases so hard to treat, and why we still don’t have a cure for the common cold.

Unlike living bacteria, which can reproduce all on their own, undead viruses replicate by hijacking their victims’ cells and then using the resources within those cells to reproduce themselves. Most viruses kill the cells they invade by replicating to the point where the infected cells burst, releasing the reproduced viruses and thus spreading viral infection throughout the body. Another type of virus, though, called a retrovirus, actually inserts itself into the host cell’s DNA, and in effect become part of the organism they have infected, commandeering the host’s genetic material and cellular mechanisms to replicate themselves without destroying the cells they have invaded. This makes retroviral diseases (such as AIDS) extremely hard to treat, and coming up with ways to neutralize retroviruses has presented medical science with one of its most daunting challenges.

Now, here comes the really strange part. When the Human Genome Project (click here) completed the incredibly complex task of mapping all of the genes contained in human DNA, it was discovered that 8% of our genetic material is comprised of the remnants of ancient retroviruses, many of which inserted themselves into our genetic material tens of millions of years ago during the evolutionary process, before humans were even human. These retroviruses were at one time in the distant past infectious, but have long since been rendered dormant, and it was initially thought that they were nothing more than “junk DNA”, left over genetic material that plays no role whatsoever in the development or functioning of a human being. These ancient retroviruses that are now part of the human genome were named Human Endogenous Retroviruses, or HERVs. They are a part of all of us, genetic remnants of our evolutionary history.

Recent research into HERVs has provided tantalizing clues that rather than always remaining dormant, in certain circumstances these ancient viruses can be activated and may play a key role in many diseases, including multiple sclerosis, many autoimmune diseases, some cancers, and even schizophrenia (click here, here, here and here). The mechanism by which HERVs are activated are not fully understood, but the prevailing thought is that the presence of other viruses and environmental agents, such as Epstein-Barr virus (click here), the human herpesviruses (click here), and other environmental triggers, or a combination of these elements, may “wake” these bits of ancient viruses that are part of our DNA. Once activated, this ancient retroviral DNA can cause our own cells to secrete proteins and antigens that may identify the host cell as a hostile invader, or otherwise initiate critical disease processes.

Within the last five years or so, it’s been established that virtually every MS patient is infected with Epstein-Barr virus (click here), which is best known for causing mononucleosis/glandular fever. I know, many of you are saying, “but I never had mononucleosis or glandular fever, so I don’t have EBV!” The fact is that in the majority of cases infection with Epstein-Barr virus does not result in Mono, but rather can present as a bad cold or flu, or can even be completely asymptomatic. Over 90% of the general population is infected with EBV, but, remarkably, it appears that 100% of MS patients carry the bug. MS researchers have long puzzled over the role EBV might play in the MS disease process, since EBV infection alone certainly can’t be the sole cause of MS, otherwise far more people would have multiple sclerosis. The link between EBV and HERVs could finally clear up this mystery, for if a long-term EBV infection can turn on ancient retroviruses embedded in the DNA of genetically susceptible people, the connection between EBV and MS might finally be understood (click here).

Though the connection between HERVs and MS has yet to be proven, more and more evidence appears to be pointing in that direction (click here), and the hypothesis does pull together some of the “wildcard” factors that have confounded MS researchers for decades. Among these factors are indicators that there is an infectious component to MS, such as the existence of “MS clusters”, geographic locations where MS appears to run rampant among the local population (click here), and migratory studies which show that migration from areas of high MS to areas of low MS before the age of 15 decreases the risk of getting multiple sclerosis, with the reverse being true as well (click here). Through the years many possible infectious candidates have been proposed, to no avail, but if the HERVs theory is correct, it’s a combination of infectious agents, including some hiding in a patient’s own DNA, that may be responsible.

Both EBV (which is itself a human herpesvirus) and retroviruses have proven to be extremely difficult to eradicate, as can be illustrated by the fight against HIV. HIV is a retrovirus, and although medical science has made great strides in developing drugs that keep HIV infection under control (deaths from AIDS have plummeted in the last decade), there is still no way to completely eradicate the virus from the body of an infected person. One anti-HIV drug, Raltegravir (brand name Isentress) (click here) has proven to be quite effective in combating HIV, though, and also shows promise as an anti-EBV weapon.

A clinical trial now underway at Queen Mary University in London, England, called be INSPIRE trial (click here), is attempting to use Raltegravir to treat MS patients. Researchers hope that the drug will deactivate any activated retroviral material in the DNA of MS patients, while perhaps also combating EBV, and thus stop multiple sclerosis in its tracks. Another group of researchers in Switzerland are trying to accomplish the same outcome using an experimental drug that targets a protein on a specific HERV that is thought to be directly connected with MS, which has been dubbed the Multiple Sclerosis Associated Retrovirus, or MSRV (click here). This is a small, 10 person Phase 2 trial whose primary goal is to establish the safety of the experimental drug being tested. Results from the INSPIRE trial, which is just getting underway, are not expected until August, 2014, and the results from the Swiss trial are expected in July of this year.

It’s impossible to overstate the potential that this research has to completely reshape the multiple sclerosis landscape, with vast implications impacting the quest to wipe out many other horrendous diseases as well. If indeed prehistoric viruses embedded within our own DNA are at work driving the MS disease process, shutting down these viruses could amount to a cure. Yes, a cure for multiple sclerosis! Though it may be hard to believe, there is precious little work being done elsewhere to uncover the roots of MS, as so much research time and money is devoted towards finding newer and more effective (and more profitable) ways to suppress the aberrant immune response that is seen in the disease, a response that is in fact a symptom of some as yet unknown underlying cause. All of the current crop of MS drugs, and the vast majority of those in the experimental pipeline, either modulate or suppress the immune system, a mechanism of action which can sometimes dramatically improve the quality of life of RRMS patients, but will never do anything to cure multiple sclerosis. The research going on in London and Switzerland at last holds out hope for a cure, and represent a radical rethinking of the cause of many of the diseases that plague mankind.

My intuition and instincts tell me that these research scientists are onto something, and it’s something potentially huge. It’s long been known that genetics play a role in MS, and it has also long been suspected that infectious agents are at work. The idea that Human Endogenous Retroviruses, bits of viruses that are in a very real way a part of us, encoded into our DNA, could play a key role in the MS disease process ties together both of these observations, as well as several others. The evidence to support this idea is mounting, and to me this hypothesis feels right in a way that no other MS related theory I’ve come across has before. Of course, you can (and probably should) take my “gut feelings” with a grain of salt, but I find myself brimming with enthusiasm that the science of treating MS is finally moving in the right direction. Of course, as I’ve often cautioned before, it’s vital not to let hope eclipse reason, and this research might well lead to nothing. But, somehow, I just don’t think that it will…

Here’s a terrific video presentation by one of the lead researchers involved in the INSPIRE trial, which does a great job of explaining the research and the ideas behind it in a very accessible, easy to understand manner. I urge all readers to watch this video, as the information it contains has tremendous potential…