Thursday, April 10, 2014

11 Years Gimpy and the Lessons Learned, Part Two

Caduceus Symbol - Medical Symbol MD

Caduceus Symbol - Medical Symbol MD (Photo credit: wcm1111)

Last month I “celebrated” the 11th anniversary of my MS diagnosis with part one of Lessons Learned (click here), which looked at some of the insights my grappling with the disease had revealed about life, both the one lived inside my head and the kaleidoscopic swirl of the world around me. Along with the expected liberal dose of anguish, the disease has also brought with it some unexpected flashes of understanding, and maybe even something akin to a bit of wisdom. Not to say that I’ve got much of anything figured out, but I have at times gained a sense of clarity that was most often missing back when I was healthy.

My decade plus wrestle with chronic progressive disabling illness has also taught me a hell of a lot about modern medicine and medical research. Admittedly, these are lessons I naturally would rather have not had to learn, but I didn’t have much choice in the matter. Multiple sclerosis is an enigmatic disease, and the rarer, progressive forms of the disease are particularly inscrutable, but my affliction managed to wake within me a long dormant inner scientist, or an at least inner scientist wannabe, who finds a lot of this stuff fascinating, frustrating, infuriating, and maybe sometimes even a little bit fulfilling. I sure do wish that wake-up call had come in the form of something much less horrific, but again, that wasn’t up to me. If nothing else, the time since my diagnosis has made for quite an education.

When I was living my long-ago and far away healthy life, my interactions with the world of medicine were usually brief and fairly perfunctory, even if I did have a pretty good working knowledge of disease due to my well hewn hypochondria. I took comfort, though, in the seemingly nonstop procession of blaring headlines and breathless news items regarding the latest medical breakthroughs, which painted a picture of modern medicine as something close to a bright and shiny miracle machine, ever more able to conquer devastating illness and fix broken bodies.

When I got sick, however, it didn’t take long for me to come to the uncomfortable realization that I’d been somewhat hoodwinked, that although some specific areas of medicine had seen huge advances, large parts of the modern medicine miracle machine so often portrayed in the media are in fact held together by shoestring and chewing gum. High-tech and expensive shoestring and chewing gum to be sure, wielded by some dedicated and knowledgeable people, but in far too many cases not much more effective than the shoestring and chewing gum that existed half a century ago.

Tremendous breakthroughs have been made in the surgical arena, where procedures that are now done daily would have been looked on as the stuff of fantasy 50 years ago. It wasn’t until 1954 that the first kidney transplant was performed, and over the next 15 years transplants of lungs, livers, and hearts were first successfully achieved. These procedures, all lifesavers, are now common if not routine. The advents of bypass surgery and angioplasty have been incredible game changers in the field of cardiac medicine, and neurosurgery too has witnessed advances barely dreamt of just a few decades ago. Surgery has become increasingly less invasive and much more survivable. Back in 1989 I suffered a detached retina, resulting in a surgery that required a four-day hospital stay and a two-month convalescence. Today, the same procedure is done on an outpatient basis. Incredible.

When it comes to treating many diseases, though, shockingly few tangible advances have been made in the last 50 years. Antibiotics have revolutionized the treatment of diseases caused by bacterial infections, but wide swathes of other illnesses have proven incredibly hard to crack. Neurologic diseases such as ALS, Parkinson’s, Alzheimer’s, and other less common maladies of the nervous system remain as untreatable as ever. The so-called autoimmune illnesses like diabetes, lupus, multiple sclerosis, and rheumatoid arthritis continue to stymie researchers, and though some of these diseases now have treatments that improve quality of life, none have divulged any of the secrets that might lead to a cure. 

Despite massive amounts of time and money spent on research, many cancers remain just as deadly today as they were in years past. Though some specific malignancies such as those of the breast, prostate, and lung are much more survivable today than ever before, the overall cancer death rate has decreased, astoundingly, only 5% since 1950 (click here)! When it comes to the vast majority of cancers, medicine has learned how to keep those afflicted alive somewhat longer, and there is of course much to be said for that, but it hasn’t found a way to keep them from dying of their malignancies. All in all, many diseases, though perhaps better understood, remain devastating and deadly despite the efforts of the modern medicine establishment. The situation makes me want to howl in dismay.

Naturally, the disease I’m most intimately familiar with is MS. Surely, there have been significant advances made in treating the relapsing remitting form of the disease, but the progressive flavors of the disease remained wicked, untamed, and diabolical beasts. Though the mysteries of MS are slowly being unraveled, the advances have been incremental, and each new discovery seems to only open the door for more questions. Just a little over 20 years ago there were no treatments for even relapsing remitting multiple sclerosis (RRMS), aside from the use of intravenous steroids to help calm down active relapses. The disease was considered by many doctors to be a “diagnose and adios” illness, for which not much could be done. Today, there are 10 FDA approved disease modifying drugs on the market, with a handful more on the way. None of these drugs is perfect, with a wide variance of effectiveness, tolerance, and potentially dangerous – and even deadly – side effects among them, but they have improved the quality of life of people with RRMS, in many cases dramatically.

I was intensely skeptical and harshly critical of some of these drugs when they were first introduced, thinking that their risks would far outweigh any potential benefits, but time and mounting evidence has softened my views. Facts are facts, and the preponderance of evidence shows that when administered properly to diligently monitored patients, even those MS drugs considered the most dangerous have had tremendous positive impact on many of the relapsing remitting patients who take them, at times even allowing some patients to live lives free of any evidence of disease activity, and experienced neurologists have learned to manage the risks involved quite well. That said, the status quo remains unacceptable. There is still nothing for us “progressives”, and all of the current MS drugs tinker to a lesser or greater extent with the workings of the intensely complex human immune system, the product of tens of millions of years of evolution. It’s clear that the aberrant immune response that has become the hallmark of MS is in reality a symptom of a much greater and as yet undiscovered ill, and continued focus on that immune response will not lead to a cure. Unfortunately, the very success of the immunosuppressant agents used to treat MS has made the search for the ultimate cause of the disease all the more difficult. Why? Because, quite simply, our system for medical research is flat out broken.

Up until about 20 or 30 years ago, most medical research was done on behalf of governments and academia, for whom profit potential didn’t much play into the equation. Since the 1980s, though, more and more research has been funded by the big pharmaceutical companies, and today upwards of 75% of all medical research is powered by pharmaceutical company monies, with that number growing ever higher due to our current economic and political climate. Though some of the business practices of these companies can be nauseating, there’s nothing inherently evil about the companies that develop, market, and manufacture pharmaceutical products.

It’s vitally important when thinking about these Big Pharma companies to keep in mind that they are publicly traded for-profit entities, and as such they are mandated by law to be beholden to their shareholders, not to the end-users of their products – otherwise known as patients. This dynamic creates some inherent conflicts of interest, as the mission of any business is to generate ever-increasing profits, and when it comes to medicine greater profits do not always translate into greater therapeutics. In some cases, the very reverse may be true.

Simply put, the job of a drug company CEO is not necessarily to produce the most effective drugs, but the most profitable. In point of fact, if a pharmaceutical CEO put medical potential above profit potential he could very well be breaking the law. Therefore, pharmaceutical company research monies pour into projects that stand the greatest chance of generating terrific profit, which are likely not efforts that might upend an already lucrative business model. This is why so many of the new drugs we see are of the “me too” variety, variations on older drugs that have already proven their profit potential. The corrosive influence of big money generated by blockbuster drugs has thoroughly infiltrated our medical research model, skewing the focus of much medical research from purely scientific to also encompass the predilections of the marketplace.

For their part, researchers, as well-intentioned as they may be, must pay the rent and feed their families just like everybody else, and so are drawn to projects most likely to receive generous funding, which are these days are those that have the attentions of the big pharmaceutical companies. Thus we have on our hands a kind of highly dysfunctional perpetual motion machine, fueled by people performing their jobs to the best of their abilities, which unfortunately is not constituted to produce the results most desired by legions of sick people and the professionals who treat them.

The problem is insidious, and is at this point woven into the very fabric of the system. Though this system has certainly come up with its share of medical advances, it hasn’t produced much in the way of cures, and in fact can stymie potentially paradigm shifting research that doesn’t present any obvious profit potential and/or threatens the status quo. Older drugs that might be repurposed for the greater good, or natural and alternative remedies that might be as effective as pharmaceutical products stand very little chance of receiving the research dollars needed to prove their worth simply because they have no potential to generate tremendous amounts of cash. Radical new concepts are often shunned not out of evil intent but for cold business reasons, as bringing them to fruition would be cost prohibitive, and even if successful they could kill the proverbial goose that lays the golden egg. We have turned diseases into multibillion-dollar industries and the sick into consumers in a topsy-turvy medical research environment in which success is most often measured in dollars earned, not diseases eradicated or people cured. What’s the answer? Got me, I’m too busy slowly watching myself becoming a complete cripple.

So, where does this leave me after my 11 year struggle with MS? Well, conflicted, to say the least. I’ve met incredibly dedicated professionals who are literally obsessed with finding the cure for MS, filling me with hope. Simultaneously, though, I’ve come to understand that despite these folk’s best efforts, the system within which they work is fundamentally flawed, a fact which fills me with consternation. That gleaming tower that modern medicine appeared to be when I was healthy has instead been revealed to be more a product of spin and public relations than reality. I’ve evolved as a person and a patient, as I’ve come to understand that there are no absolutes when it comes to life and medicine, and especially when it comes to a disease as devilish as multiple sclerosis.

Despite the mysteries of the disease and the madly dysfunctional research model that is now the norm, each day I read some stimulating new bit of research, or talk to a researcher wholly dedicated to the cause, and can’t help but nurture a persistent optimism, even in the face of my relentlessly progressing disease and the tremendous obstacles that stand between me and the realization of my dream to once again be whole. Stem cells may hold the answer, or anti-HIV drugs, or something completely unexpected that may pop out of some far away test tube tomorrow. We can only hope that if and when such a discovery is made, it manages to see the light of day.

Really, though, I just want to take a walk…



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Thursday, March 27, 2014

Bits and Pieces: Can’t Please Everyone Edition (Also, MS and: Statin Drugs, Ancient Viruses, Obesity, and Contraception; Thank Your Doctor, and an MS Photo App!)

For those readers who receive Wheelchair Kamikaze via email, this post contains videos that can only be viewed on the blog website (click here).

In my meanderings around the MS Internet, poking my nose into both highly trafficked spots and those more obscure, I occasionally find references to individual Wheelchair Kamikaze posts or to the blog in general. Usually these mentions are quite complementary, and upon reading them I sit before my screen blushing like a young man who just vomited at his boss’s table during the office Christmas party (um, not that I would have any firsthand knowledge of what that would feel like… and if Mr. Riley is reading this, I still insist it was the Cornish hens and not the Bombay Sapphire martinis).

Over the past week or so, though, I noticed comments from a couple of people who weren’t all that thrilled with me. Not that this is necessarily a bad thing, because I like to think that I’m very open to healthy criticism, and besides, it was interesting to see just how many times an iPad can bounce off the floor before becoming completely nonfunctional.

One critic said that I was very “pro-chemotherapy”, and the other labeled me as part of the “CCSVI Mafia”. I find these characterizations somewhat puzzling, since they are kind of contradictory, and I’m not sure either is accurate. I often come down hard on some of the unsavory business practices of the pharmaceutical companies, but I think I give their products a fair shake (I guess too fair, in the eyes of some), and when I write about CCSVI or other alternative treatments I always try to stress that one must be careful not to let hope eclipse reason. I suppose the fact that people can read my stuff and come away with such divergent opinions might mean I’m actually doing a pretty good job; on the other hand, it could also mean I’m totally incoherent. Birdseed armpits genuflecting knuckle fish, Tennessee Titans!

For the record, I think it's silly to be "pro" or "anti-" any particular form or category of treatment. Each MS patient is different, and each must weigh the risks and benefits of any treatment they are considering based on their own individual circumstances. Some currently marketed pharmaceutical MS drugs might often fail such an analysis, but other would certainly be in play. Same thing holds true for many unconventional therapies. Education and an open mind are a patient's best weapons against this disease, and will continue to be regardless of the many twists and turns the MS story takes as it continues to unfold.

Okay then, enough of my belly gazing, here’s another collection of mostly MS related items that have tickled my fancy or raised my hackles over the last month or so. I don’t think any of them tickled my hackles or raised my fancy, as to do so they’d at least have to take me out for dinner and a movie first…

♦ First up, an update on the fundraising campaign for the Tisch MS Center’s FDA approved MS stem cell trial, which I wrote about extensively in my last post (click here): As I write this, the Center’s Indiegogo campaign is approaching $200,000 raised, two thirds of the way to their target of $300,000. As I detailed last week, this stem cell trial could play a pivotal role in one of the most promising new directions in multiple sclerosis research, and contains within it the hope that someday in the not-too-distant future we may be able to reverse the damage done by the disease. So, a big thank you to all WK readers who have already contributed, and a big “please help” to those who haven’t yet done so. Every little bit helps, and a contribution of even a dollar or two gets the trial that much closer to swinging into high gear. Contributing is easy, just go to the Tisch Center’s Indiegogo page (click here) and click the “Contribute Now” button. Thank you thank you thank you.

♦ This week’s big MS headlines involve a study which found that a drug commonly used to control cholesterol might dramatically slow the progression of multiple sclerosis in patients with Secondary Progressive disease (click here). The phase 2 study, called MS-STAT, demonstrated that the statin drug simvastatin (brand name Zocor), when given in high doses, slowed brain atrophy by as much as 43% when compared to a placebo. Brain atrophy (shrinkage) is increasingly being recognized as an important factor in the MS disease process, and may be more indicative of disability and disease progression then other more commonly used indicators such as brain and spinal cord lesions.

The MS-STAT study is intriguing on several levels. The fact that a class of drugs as commonly used as the statins may be effective in treating progressive MS is both intriguing and problematic. Intriguing because the drugs are already in widespread use and have been shown to be safe over the several decades since their introduction. Therein, though, is also the problem. Because these are old drugs, their patents have expired, meaning they are available as cheap generics. Therefore, there’s not much profit to be made from them, and thus there is very little incentive for pharmaceutical companies to pony up the many millions of dollars it would cost to put these drugs through the final phase 3 studies that would be necessary to get them approved for use in MS patients. This isn’t really the fault of the pharmaceutical companies, per se, as they are for-profit operations in business to make money. Rather, this shines a bright spotlight on our very broken medical research model, which relies far too heavily on Big Pharma funding to drive research forward.

It’s conceivable that neurologists could prescribe simvastatin to MS patients on an “off label” basis, since the drug has already been approved for use in humans as a cholesterol buster. Problematically, though, the doses used in the MS study were quite high, and statin drugs do have some known side effects, including muscle weakness, which certainly wouldn’t be a good thing for MS folks. The MS-STAT trial was a relatively small phase 2 study, and its results beg to be replicated in a larger phase 3 study, especially since previous trials testing the use of statin drugs as an add-on therapy for RRMS patients did not demonstrate effectiveness (click here), and some studies showed that statin drugs may inhibit the remyelination process (click here). Let’s hope that somehow phase 3 studies can be funded, as progressive MS patients are in desperate need of effective treatments.

♦ One of my favorite theories about the cause of MS involves human endogenous retroviruses, or HERVs, which I wrote about in detail last year (click here). The theory is once again making headlines (click here). HERVs are ancient bits of retroviruses (viruses similar to HIV) that have been incorporated into the human genome throughout the course of millions of years of evolution. Hard as it may be to believe, studies have found that about 8% of human DNA is actually made up of these ancient viruses. Scientists had long thought that this ancient viral material was simply leftover inactive garbage, but recently researchers have found that, under certain conditions, these ancient viruses can be switched “on” and cause our own cells to express proteins that could lead to all kinds of problems in the human body. HERVs have been associated with autoimmune diseases, cancers, and even some mental illnesses.

There are currently two trials underway attempting to use drugs to target HERVs in MS patients. One study, being conducted in London, is using an off-the-shelf HIV medication called Issentris in an attempt to treat MS. This study has its genesis in the observations of an Australian virologist, Dr. Julian Gold, who treated a patient unlucky enough to have both MS and HIV. After the patient started taking powerful anti-HIV drugs, Dr. Gold observed that the patient's MS symptoms gradually improved, and after two years the patient was no longer experiencing MS relapses. Subsequent studies have indicated that the risk of MS is markedly lower in HIV patients undergoing anti-HIV therapy than that of the general population. Interesting stuff, to say the least…

♦ Two new studies point to a hormonal component in the MS disease process (click here). One study found that people who were obese at age 20 had a 50% higher chance of developing MS than their thinner counterparts. Obese people also generally have higher levels of lectin, a hormone that controls weight, appetite, and immune response. The second study found that women who took hormonal contraceptive pills had a 35% higher rate of developing MS than women using other types of contraception or no contraception at all. Most of the women taking hormonal contraceptives were on pills that combined estrogen and progestin. Researchers suggested that this finding may explain the rising rate of MS in the female population.

It’s long been thought that hormones play some role in MS. Pregnant women with MS usually see their disease go into remission during their pregnancies, and male MS patients often exhibit low testosterone levels. On a personal note, my entire endocrine system is completely out of whack, with many of my hormone levels all over the place. I’m the only male who suffers from PMS (in my case, the initials stand for Phooey on Marc Stecker).

♦ Do you have a physician that deserves a great big “thank you”? Do you want the chance to win a $10 iTunes gift card? Well, if the answers to those questions are yes, you’re in luck, because it just so happens that March 30 is National Doctors Day and the fine people at Sermo.com are asking that patients contribute a message via the Sermo website thanking their favorite doctors (click here). Sermo is a social networking site for doctors, kind of a Facebook for physicians. The thank you’s can be submitted in written or video form, and the 50 best will win a $10 iTunes gift card. Written comments can simply be left on the Sermo blog (click here). Video entries should be uploaded to YouTube and include “DocsDay” in the title. The video link should then be tweeted to @sermo with the hashtag #DocsDay.

I know that many patients have a love/hate (or even a hate/hate) relationship with some of their doctors, and I also know that some physicians deserve not a thank you but a whack in the head with a horse manure filled sock. But there are many gems amongst the folks who have the initials M.D. after their names, and those paragons of their profession certainly deserve a public shout out. As of this writing, there were less than a dozen written thank you’s on the Sermo.com blog and just a few videos on YouTube with only three days to go before March 30, so your chances of winning a gift card are probably pretty good if you submit a heartfelt message before the deadline.

On the video “thank you” side of things, this lady decided to extol the virtues of her MS neuro in song, and all I can say is “wow!”:


♦ Here’s an MS fundraising/awareness project that’s right up my alley. Seeing MS is a project done in conjunction with the Australian MS Society that has matched professional photographers with MS patients to attempt to produce photographic representations of “invisible” MS symptoms (click here). The photos thus far produced are remarkable, but to me the best part of the project is a photo app that MS patients (or anybody else) can download for their iPhone or android devices, which has unique filters that can be used to create photos that emulate nine of the more common symptoms of MS.

Amateur MS phone photographers can shoot pictures using the app, apply the filter of their choice, and then upload their photo to the Seeing MS website, where it will be displayed for all to see. The best images will be chosen to be part of an exhibition and auction to be held at the end of April. So download the app (click here) and start clicking away. I’ve already uploaded a photo or two, and would love to see some of my WK brethren join me in displaying their work on the Seeing MS website.


♦ I’ll sign off with the following video, which explores a topic I'm very much familiar with, the enigmatic hour of 4 AM. I am by nature a nocturnal creature, always have been. Even as an infant, my mother tells me, I was prone to stay up very late and then sleep well into the morning. When the realities of adult life forced me to conform to the typical 9-to-5 hours of the workaday world, I found the schedule to be quite torturous. Since "retiring" due to my illness, I've reverted back to my natural inclinations. While most people are long asleep by 4 AM, and some poor souls are just waking up, these days I find that hour to quite often be my bedtime. In the below clip, a part of the famous TED talk series, the poet and storyteller Rives reveals his humorous discovery of a 4 AM conspiracy, the hour encoded into the very fabric of our culture as a sort of touchstone for things mysterious and gloomy. So, are my sleep habits merely a coincidence, or have I tapped into some kind of cultural zeitgeist, my late-night predilections a reflection of some universal subconscious? Well, I don't believe there is any such thing as coincidence, but if my quirks are symbolic of a hidden societal phenomena, I fear much wackiness may ensue in our collective future…



RIP Brett Weber, gone but never forgotten. Thanks for the smiles.

Sunday, March 16, 2014

Pioneering MS Stem Cell Trial Needs Your Help!

I've very rarely used Wheelchair Kamikaze to directly appeal for charitable donations to help any individual research project, as I've always been extremely wary of abusing the trust that's been built up between me and my readers. Very recently, though, I've been alerted to a cause that I feel is so fundamentally worthwhile that I decided to devote this entire essay to making such an appeal.

It is my most fervent desire to see crippling neurologic diseases wiped from the face of the planet, and to put the nightmarish world of such diseases firmly in the realm of history. There is a long-awaited research project currently in need of funding that has the potential to radically change the MS treatment landscape. Before I get into the dollars and cents of things, though, let me first provide a little background.

One of the most cherished dreams of every patient suffering from the ravages of multiple sclerosis is to see their losses reversed, to one day triumphantly trash their canes, walkers, and wheelchairs; to at long last find eyesight restored, withered limbs strengthened, and numbed minds sharpened. For those whose lives have been victimized by MS, this is the stuff of reverie, a hope so precious that it can sometimes feel taboo to speak of for fear it may be crushed.

It is the power of such dreams that make the use of stem cells to treat multiple sclerosis one of the most tantalizing areas of study currently underway in the world of MS research. Stem cell therapy offers the hope of repairing damaged tissues in the central nervous system, thereby restoring function lost to the scourge of disease. All currently available MS therapies seek, at best, to put the brakes on disease progression. None are targeted at or capable of neural regeneration, the process by which damaged nerve cells might be fixed and lost function thus regained.

Despite exciting headlines and overhyped internet buzz, the reality is that research into the use of stem cells to repair MS damage is only now taking its first baby steps. Like most paradigm shifting scientific breakthroughs, the realization of the dreams for stem cell therapy will take time, the effort of brilliant minds, and money. There are currently only two FDA approved trials of the use of reparative stem cells to treat MS, one at the Cleveland Clinic and the other at the Tisch Multiple Sclerosis Research Center of New York (click here), which is associated with the clinic at which I am a patient.

Both studies intend to use stem cells derived from a patient’s own bone marrow in an attempt to repair the damage done by the disease. While the two studies each use a type of cell called mesenchymal stem cells, or MSCs, the study at the Tisch Center uses a more complex but also potentially more powerful approach. After more than a decade’s research by a team of scientists dedicated solely to stem cell therapies, led by Dr. Saud A. Sadiq, researchers at the Tisch Center have developed a proprietary method for turning mesenchymal stem cells into neural progenitor (NP) cells, a type of stem cell specific to the central nervous system (CNS) that, in theory, should be extremely effective at repairing CNS damage at the source of the problem.

The process begins by extracting bone marrow from each patient; the patient's mesenchymal stem cells are then separated out from this material. The Tisch Center then takes those MSCs, and, using a recently patented process, inducing them to transform into potentially more potent neural progenitor cells, which are then multiplied over several months in the laboratory. These NP cells will be injected directly into the spinal fluid of trial subjects, in three individual treatments, each given at three-month intervals. Preliminary studies using animals have provided very encouraging results, and nervous system damage has actually been reversed. The Holy Grail of MS research may finally be within sight.

The Tisch Center, which is an independent facility unaffiliated with any university or hospital, had been applying to get FDA approval of their proposed trial for many years. During this time, federal regulators diligently insisted time and time again that more evidence be provided and that further animal studies be done. Throughout this arduous process the staff of researchers at Tisch worked hard to refine their techniques and methodology, and produced increasingly convincing data. The Tisch Center finally received their long-awaited FDA approval in August, 2013. That glow you see coming off of your screen may be the first light of a radical new age in MS therapy creeping over the horizon.

Unfortunately, one major roadblock stands in the way of launching the now FDA approved Tisch Center MS stem cell trial: funding. Though the Tisch Multiple Sclerosis Research Center of New York is a registered nonprofit organization, almost all of its fundraising efforts thus far have gone into the research that has made this trial possible. The cost of the initial 20 patient trial will be about $600,000. Towards reaching that end, the Tisch Center has set up a funding page at the crowdfunding website Indiegogo, where people from all over the world can contribute any amount from one dollar to fifty thousand dollars or more to help set the trial in motion (click here). For those in the US, the Tisch Center’s foundation is fully 501(c)(3) compliant, so any donations made are completely tax-deductible. The Indiegogo campaign has a set goal of raising $300,000 by April 14, 2014 at 11:59 PM PT. The campaign has already collected over $100,000 in donations, so as of today there’s about $200,000 to go. Detailed information on how these funds will be spent is available on the Tisch Center’s Indiegogo funding page (click here).

It may seem strange that an FDA approved trial should lack sufficient funds to get started. The Tisch MS Research Center of New York is an independent research organization funded solely through charitable donations, a status that has allowed it to pursue audacious research goals, but which also means that it doesn’t have the deep-pocketed resources that a research group affiliated with a well-endowed university or hospital might. Medical insurance does not cover the costs incurred by patients undergoing trials, and researchers at Tisch consider it unethical to require trial subjects to pay for unproven treatments.

Traditionally, medical research has been funded by the federal government or, increasingly, by the big pharmaceutical companies. Ongoing battles over the US federal budget have resulted in the (in my opinion unconscionable) slashing of medical and scientific research funds to paltry levels (click here, here, and here), and thus far no pharmaceutical company has funded any trials using a patient’s own stem cells, quite likely because the success of such a trial could have a tremendously negative impact on the mega-profits many companies are making selling MS disease modifying drugs.

It is a matter of record that the pharmaceutical industry concentrates tremendous resources on influencing the FDA (click here, here, and here), and is actively lobbying to have the FDA declare that a patient's own stem cells are pharmaceutical products (click here, here, and here), an outrageous claim (again, my opinion) which would effectively shut down independent stem cell research organizations like the Tisch Center and place adult stem cell research firmly in the hands of Big Pharma. It is always vitally important to remember that these are public companies whose legal mandate is to continually expand their bottom lines, a motivation that sometimes puts shareholder interests at odds with those of the patient. Big Pharma innovations have dramatically increased the quality of life for some MS patients, but the reality is that conflicts of interest arise when there are billions to be made treating a disease, not curing it. Yes, I’m fully aware that to some the previous sentences may read like the rantings of a paranoid schizophrenic, but if I’m completely nuts, I’m in good company. Please read the material linked to above, which includes an opinion piece from the bastion of anti-capitalist radicalism that is the Wall Street Journal, and connect the dots…

As stated earlier, I’ve rarely used this blog as a platform to solicit donations for any cause or organization, but I feel funding the Tisch Center MS trial is tremendously important to people with MS and all those who love them. I’m sick of being sick, and I’m sick to death of watching many of my MS friends slip ever further into the clammy grasp of this horrendous disease. Because of the atypical nature of my illness, I very likely will not be part of the 20 person trial, so I’m not making this appeal on my own behalf. At least not directly on my own behalf, as the success of this trial stands to benefit all patients suffering from not only MS but a wide variety of other neurodegenerative disorders, and traumatic brain and spinal injuries as well.

So, from the bottom of my Wheelchair Kamikaze heart, I ask all of my readers to do themselves or their loved ones a favor and (click here) to donate even the smallest amount to move the Tisch Center’s stem cell trial forward. And please, please, please pass the word along (or forward this blog post) to family and friends using email, Facebook, Twitter, or any other newfangled thingamajig or whatchamacallit to help make this cause go viral, as every donation great or small could very well take us that much closer to the stuff that dreams are made of…

Sorry, couldn’t resist conjuring up a little Humphrey Bogart there at the end. I was a film major, after all. Speaking of film, the below video detailing the Tisch Multiple Sclerosis Research Center of New York’s stem cell trial and fundraising effort is also available on their Indiegogo fundraising page (click here).


Tremendous thanks in advance to all who find it in their hearts to make a donation.

Wednesday, March 12, 2014

11 Years Gimpy and the Lessons Learned, Part One

March 9, 2003 was a typical late winter’s day in New York City. The temperature was about 30°F, but the sun shone brightly, and in the late afternoon, feeling a little bored and just wanting to get some fresh air, I decided to take my furry pal Stella the Labrador Retriever for a nice long walk. We made our way to a bike path that runs along the Hudson River on the west side of Manhattan and headed north, our ultimate destination the Soldiers and Sailors Monument, a structure which was completed in 1902 and is dedicated to the soldiers and sailors who served in the Union Army during the American Civil War. The round-trip would total about 2 ½ or 3 miles.

We arrived at the monument (a photo I took of it that day is to the right) after a brisk 30 or 35 minute walk, stopping every now and then for Stella to do some serious sniffing and other doggie business, and then headed back home along the old uneven cobblestones that paved the section of sidewalk surrounding the 100-year-old memorial. As we walked, I slowly realized something funky was going on with my legs. I seemed to be wobbling a bit with each step, and with my attention focused on just what the heck was happening with my pegs, I recognize that my right knee was buckling backwards with each stride I took. I stopped, flexed and shook my leg a bit, and then continued on, but the strange buckling persisted.

Being a well rehearsed hypochondriac, a long list of possible explanations for my wonky knee flooded my brain. Could be a pinched nerve, I reasoned, or the first signs of something much worse. Brain tumors always topped my list of obsessive fears, so of course the potential for a brain gobbling malignancy immediately sprang to mind. Other candidates included Lou Gehrig’s disease (another long standing dread), spinal stenosis (which crippled my grandmother), and yes, multiple sclerosis (always high in my pantheon of disease paranoia because my initials are MS). I clearly remember thinking that MS was a distinct possibility.

Thus began my adventures in neurology. Though the limp disappeared after I rested a while, it returned whenever I went for an extended walk, and the distance required to bring it on diminished noticeably over the next couple of months. By late April I was concerned enough to haul my limping ass to my M.D., a general practitioner. Though he initially didn’t think there was much to be worried about, an MRI was ordered, and the rest, as they say, is history.

Fast-forward 11 years, and the embers of that intermittent limp sparked a raging inferno that has consumed my entire right side, which is now essentially paralyzed. Clearly not content with demolishing only half of my body, this neurologic rot has continued on to attack my left side, leaving it considerably and ever increasingly weakened. Throw in a veritable potpourri of other neurologic niceties, such as bladder/bowel issues and sensory problems, along with a mystifying array of endocrine dysfunctions, and I’m pretty sure any aliens looking to abduct earthlings for nefarious intergalactic experiments would take a pass on this particular human. Should war break out, the armed forces could probably best put me to use as a sandbag.

This is not to say that the past 11 years have been nothing but pure hell. Though aspects of them have certainly been hellish, along the way I’ve met and befriended some wonderful people in both the virtual and real worlds, and learned lessons that I’m positive otherwise would have escaped me. While I’m pretty damn sure there are more pleasant paths to enlightenment, grappling with my illness has taught me valuable lessons about myself, life in general, and the realities of modern medicine. To avoid writing a novella, I think I’ll tackle the assorted lessons learned in two blog posts, this one covering some of the insights gleaned regarding life with chronic illness and the realizations that my circumstances have revealed about the human condition (sounds kind of heavy, no?), and a follow-up discussing my escapades within the hall of mirrors that is the modern medicine miracle machine.

So, what has my life as a gimp exposed about me and my fellow humans? First, I’ve discovered that I’m awfully good at doing nothing. And that doing nothing can take up an incredible amount of time. Of course, “nothing” is a relative term, especially when one is down to working with only two somewhat compromised limbs. When getting on a pair of socks can be considered a triumph of the will, expectations naturally become tempered. Yes, I’d love to reclaim my place in the hypersonic land of the healthy, but, barring some paradigm shifting medical breakthrough, that’s not about to happen. So acceptance is the key, so long as acceptance is never confused with submission. I can accept my predicament, and maybe even at times embrace it, but I will never try to reframe it as some kind of blessing or, conversely, roll over and simply let the disease have its way with me. If it turns out the best I can do is just spit in the face of the disease, then I’m going to hock up one hell of a loogey.

I’ve discovered that I have far more fortitude than I ever would’ve imagined back in my anxiety ridden pre-multiple sclerosis life. Watching the disease continuously chomp away at me has been nothing short of horrifying (not really a strong enough word), and yet here I am, still able to have a good laugh, root for the Red Sox, and scream curses at politicians on TV. This fortitude, though, is born more out of necessity than from some hidden wellspring of bravery. I can either curl up into a ball or try to get on with life as best I can, and curling up into a ball would just flat out suck. At times I’ve read or heard others refer to me as some sort of a hero. Let me state emphatically that I am no hero. A hero is somebody who voluntarily puts themselves in grave danger, or otherwise displays some sort of uncommon valor. People who throw themselves on grenades to save their comrades or run into burning buildings to help those trapped within are heroes. I’m just trying to save my own ass.

Delving into medical research, attempting to continue doing photography in some shape or form, and even writing this blog all fall under the category of “saving my own ass”, each of them an expression of my desire to either get better or at least retain a few remnants of the me that used to exist. The fact that this blog has touched so many and maybe even helped others cope with situations similar to mine is tremendously humbling and fantastically gratifying, but rest assured Wheelchair Kamikaze is simply one man’s desperate attempt at screaming out to the world at large “I’m still here!”

Having said that, I owe a tremendous thank you to all who read these words, and an especially humongous expression of gratitude to those who take the time to comment on these pages or send me emails, even if those emails sometimes don’t get a reply. In many ways you have provided a method to this madness, and helped to turn all of that aforementioned “nothing” that I find myself infinitely occupied with into a definite something.

Life lived under the stress of chronic progressive illness has also revealed some of the less savory aspects of my being. Though I am loath to admit it, I find myself at times suffering from a sort of disease envy. Yes, of course I lust for the vigor of those blessed with health, but in a twisted way I also find myself jealous of people afflicted with diseases somewhat less insidious than mine, and sometimes even of those suffering from illnesses that many would consider far worse than my relentless and progressively disabling malady. RRMS, the flavor of MS defined by relapses and remissions, comes with its own set of horrors, but at least there are treatments for the disease, however imperfect they may be, and part and parcel with RRMS come those periods of remission. So, yes, all of you relapsing remitting people out there, you are the object of my envy, as cracked as that may be. I don’t in any way mean to diminish the awfulness of your situation, but I’m just telling it like it is.

Perhaps crazier still is the fact that there are moments when I find myself staring green eyed at illnesses that most would consider beyond the stuff of nightmares, like incurable cancers and even ALS. Now, there’s an ugly admission. Thing is, when those almost unimaginably horrific diseases are done brutalizing those they afflict, they at least have the common decency to kill their poor victims. Not progressive MS, though, fiendish beast that it is. Instead, the dreadful dark at the end of the progressive MS tunnel is the almost unthinkable reality of being forced to live out life as a fully conscious brain trapped in an impenetrable prison of useless flesh and bone. Ghastly, just ghastly.

Is such an end inevitable? No, there are certainly cases where the disease slows down or even ceases, but so far I’ve never had a hint of either, and I’m not even sure that what I have is Primary Progressive MS. I’m never one to give up on hope, and who knows, tomorrow may be the day that some tremendous advance springs forth from some researcher’s test tube. Nobody lives forever, though, and these past 11 years spent contemplating my own mortality have left me wholly and truly unafraid of death. In another 100 years the planet will be populated by a whole new set of people, and I and everyone reading these words will be just the faintest of memories if we are remembered at all. I honestly find comfort in that thought, and it reaffirms my conviction that life is all about quality, not quantity. Cuddly fluffy puppy dogs frolicking with baby bunnies – sorry, just had to throw something in there to lighten the mood…

One entirely unexpected result of my affliction is that, ever since I was forced into “retirement” seven years ago, my life has been split into two distinct sections: my healthy life and my life as a gimp. My rather sudden evac from the ongoing narrative of my healthy life afforded me, after the shock of my new circumstances wore off, the opportunity to look back on that old life and dissect the infinitely tangled strands of decisions, coincidences, actions, and fate that determined its shape. In effect, the experience was almost like attending my own funeral. In many ways the old me is dead, in as much as most of the narrative strands that I’d been weaving have been severed. Hopes and expectations for the future had to be completely revised, targets tempered and shifted, and semi-amorphous plans to rectify old wrongs or revive dreams and aspirations through some future triumphs put to bed. Not that this was all entirely negative, as this fracturing of my existence gave me a chance to glean from the wreckage insights and realizations that have been quite illuminating. Even as my body has deteriorated, my inner life, the one inside my head, has at times achieved a kind of clarity I never would have thought possible. Don’t get me wrong, much of the time I’m just as befuddled as I ever was, but now that befuddlement is occasionally punctuated by moments of exuberant understanding.

I’ve learned how important it is to forgive past transgressions, both those committed by others and, perhaps more importantly, those of your own making. Holding onto old grudges is toxic, but we can grow so used to living with our poisons that the prospect of letting them go can seem excruciating. We’ve all been screwed over by others and by ourselves, but what’s done is done and no amount of indignation, righteous or otherwise, can right old wrongs. Festering anger burns only the one harboring it, and hate is the enemy of happiness. Practicing kindness is of course a virtue, but practicing kindness to self, perhaps the most difficult form of kindness to tender, is a balm for the soul. This doesn't mean giving yourself a blanket pardon, as you must take ownership of the wrongs you've committed, but you also must learn to release them. Not saying that I have the whole kindness and forgiveness thing mastered, but recognizing its importance was a huge step forward.

Being disabled has forced me to accept the help of others, and guess what, rather than being diminishing, allowing others to lend a hand can be empowering for both parties. And in my case, when I say “lend a hand”, I’m not always talking figuratively. I can exhaust myself struggling to put on a coat, or I can accept the assistance of a friend or stranger and save my limited resources for more important things. Hey, these days I’ll even let them zip the damn thing up. I’ve come to understand that this is a classic win-win situation. By accepting, or even asking for, the help of others, you’re giving them a chance to do their good deed for the day and to then feel noble for a while. So in a sense, by asking for help you’re also doing your good deed for the day. Sure, it may take swallowing a little pride, but as they say, pride goeth before the fall. And when it comes to MS, that fall could easily lead to a bruised forehead.

Examining many of the relationships I had in my old life, romantic or otherwise, lifted the veil on what I believe are some truisms about human behavior. One of the biggies is that liars lie and cheaters cheat. Of course, none of us are without blemishes, and we've all done things that would make our mothers embarrassed to have borne us. Most of us suffer varying degrees of remorse over our indiscretions, but there are those out there for whom lying and cheating become a modus operandi. Once a person accepts such behavior in themselves, it’s a surefire bet that they will continue those behaviors, heedless of the damage they may do to those around them. They may protest vigorously that they’ll never ever again do such a vile thing, but you can almost rest assured that somewhere down the line liars will lie and cheaters will cheat.

A closely related insight is that most people assume that others are pretty much just like them. So, habitual liars assume that everyone else lies too, and folks who are by nature primarily honest think that others are generally playing it straight. Danger abounds when these two worlds collide, the brunt of which is borne by the sincere. Therefore, it’s vitally important to recognize people for who they are, though their base selves may be hard to discern under layers of charm and guile, and we can at times he willfully blind to such characteristics due to our own complex psyches. Eventually a person’s true nature will reveal itself, and if that nature includes an acceptance of deceit, recognize it and put that knowledge to good use. This goes for romance, friendships, and business relations.

I’m not saying everyone should live a saintly existence, as I’m a firm believer that some occasional debauchery is harmless, and is in fact essential to living a interesting, fulfilling life. Some of the most remarkable and stimulating people I've met have faults a mile wide, and in fact it's those imperfections that often make these people so beguiling, but do yourself a favor and when dealing with those of this ilk go in with your guard up and your eyes wide open. Nobody is entirely good or bad, it’s all a matter of degree. Some people, though, do have a wicked gravity; be careful not to get sucked in.

Which I suppose brings us back to practicing both kindness and forgiveness, mostly because this essay has become so god-awful long despite my assurances that I wouldn’t write a novella. So please forgive my verbosity, and if you’ve managed to make it this far, I offer you my kindest thanks.

Stay tuned for part two, which will deal with all I’ve learned navigating the medical minefields these past 11 years. I promise, I’ll try to keep it shorter than a Russian novel…

Monday, February 24, 2014

Bits and Pieces: Arctic Vortex Edition

Okay, I know it’s considered terribly mundane and just downright boring to talk about the weather, but the winter here in NYC and in much of the Midwest and Eastern US has really been something else these last few months. Since weather reports here in The States only occasionally and very briefly touch on conditions outside of our borders, I’m only parenthetically aware that much of the rest of the world has also experienced extreme conditions this winter as well, but I do know that plenty of WK readers all around the world have been hit with some downright nasty tricks from mother nature this season.

Here in NYC, we’ve been subjected twice (so far) to a meteorological horror called the Polar Vortex, a huge mass of frigid air that descends from the North Pole, bringing with it plunging temperatures and loads of snow. In my previous 49 winters I don’t recall ever hearing anything about a Polar Vortex, though I do remember plenty of times freezing my ass off, so perhaps this is just a new name for an old song. Whatever the case, getting around in a wheelchair in temperatures fit for the Arctic can be brutal. Not that walking around when the wind chill hits instant frostbite territory is any great shakes, but at least the very act of walking generates body heat. Sitting in a wheelchair does no such thing, and the breeze added by zipping around at 7 or 8 mph only adds to the freeze.

Fortunately, I’ve got some very good cold-weather gear. Never mind high-tech fleece and modern materials like Thinsulate, my warmest piece of kit is an exact replica of the shearling jackets worn by US airmen fighting high in the skies above Europe during World War II. Back then the interiors of military aircraft were unheated, and at 20,000 feet the temperatures were routinely well below 0°F. My B-6 flight jacket is so warm that I can’t wear it in temperatures much above 25°F, and even when the temperatures hit the single digits a T-shirt and a thin wool sweater worn under the jacket are more than enough to keep me toasty. I also have a replica of the shearling hat worn by World War II flight crews, so decked out in my vintage military gear I can zip around the frozen city making believe my wheelchair is a P-51 Mustang fighter plane engaged in fierce dogfights with the mighty Luftwaffe (represented by oblivious pedestrians staring at their cell phone screens despite the freezy conditions) on the streets of New York. I’m proud to say this winter I’ve achieved the lofty status of “ace”, having bagged far more than the requisite five kills. Mwah hah hah.

Unfortunately, donning the flight jacket requires wrestling with my arch nemesis, the zipper. The freaking things are almost impossible to use when you’re down to only one marginally good hand, so I have to allot myself an extra 10 or 15 minutes of prep time just to get my goddamned coat on. Have I ever mentioned that having MS sucks? (I’ll be presenting some exciting zipper related news later in this post, I hope you can bear the suspense.) Luckily, for temperatures just a bit below freezing I have a very special pea coat that my mother-in-law, who is quite the whiz with a sewing machine, made into a Velcro fastened wonder. She removed the buttons and then sewed them on top of the coat’s now sealed buttonholes, affixing Velcro fasteners to the garment where the buttons would normally hold the coat closed. The black Velcro patches exactly match the color of the coat, making them almost invisible, and when I put it on the coat practically “buttons” itself. The buttons sewed over the buttonholes give the illusion that the coat is fastened in the customary fashion, giving no hint of the Velcro customization within. I made sure to get a military issue pea coat, so the thing is quite warm and sharp looking to boot. I’m pretty sure I have the only Velcro fastened pea coat in existence, and I’m positively tickled with my piece of unique outerwear. It’s like haute couture for gimps.

So, between my World War II flight jacket and my MS friendly Navy pea coat, I’ve got the problem of winter wheelchair attire practically licked. I’m sure this comes as a great relief to all of you, so rest easy, the Wheelchair Kamikaze will not be found frozen stiff in his chair on the thoroughfares of New York anytime soon. And the Luftwaffe will not be menacing the sidewalks of NYC, at least not on my watch. After all, terrorizing the streets of New York is my job.

But enough about me, there’s been a lot of interesting MS and disability related news lately, so forthwith comes my semi regular compendium of noteworthy tidbits… Onward, doggies, mush mush…

♦ There’s no denying that in addition to being a horrible disease, multiple sclerosis is also a burgeoning multibillion-dollar a year industry, with many of the drugs developed to combat the disease attaining “blockbuster” status. Ever wonder just how much money MS drugs bring in? Well, wonder no more, because here’s a list of the top 10 selling MS drugs of 2013, along with the cash flow generated by each (in American dollars):

#1: Copaxone-$4.3 billion

#2: Avonex-$3.0 billion

#3: Gilenya-$1.9 billion

#4: Tysabri-$1.7 billion

#5: Betaseron-$1.1 billion

#6: Tecfidera-$876 million

#7: Rebif-$622 million

#8: Ampyra-$302 million

#9: Aubagio-$226 million

#10: Extavia-$159 million

Add up all of that mazuma, and the top 10 selling MS drugs generated sales of roughly $14,000,000,000 last year. Yup, that’s a lot of zeros. Keep in mind, the sales of Tecfidera only represent about one quarter of the year, since the drug was first approved midyear and didn’t reach patients in large quantity until the fall of 2013. Additionally, Tecfidera was only recently approved for use in Europe (click here), so expect sales of the drug in 2014 to approach at least four or five billion dollars. Factor in all of the money made by MS neurologists, MRI facilities, infusion suites, medical laboratories and other MS related services and facilities,  and it's easy to see that multiple sclerosis has become quite the cash cow. I don't know about you, but the idea of "disease as industry" makes me a little bit queasy. For more info on each of the above drugs (click here).

♦ Speaking of blockbuster MS drugs, the Israeli pharmaceutical company Teva has received FDA approval for a higher dose Copaxone regimen requiring injections only three times a week (click here), as opposed to the daily injections patients currently on Copaxone must undergo. Copaxone was among the first of the disease modifying therapies to be marketed for MS, and was first approved in 1996. Since then, the drug has been shown in several studies to effectively reduce relapse rates and enhancing lesions for those RRMS patients on whom it is effective by about 35%. Recent open label studies looking at the long-term effects of the drug indicate that Copaxone may also positively impact the rate of disease progression (click here).

One may wonder why it took Teva 18 years to seek approval for a thrice a week version of the drug, since the new dosing schedule is obviously much more appealing than the old daily injection regimen. Maybe I’m a jaded cynic, but the fact that several companies are preparing to introduce generic Copaxone on the market might just have a little something to do with it. All of the generic versions of Copaxone are undergoing trials as once daily injections, so by getting approval of the three injections a week dosing regimen, Teva has made good old-fashioned brand-name Copaxone a much more appealing option from the patient perspective. Additionally, the success of Tecfidera, an oral medication, may also have played a role in Teva seeking a way to make the administration of Copaxone a less painful proposition. As was illustrated in the above list of top grossing MS drugs, Teva has about four billion reasons to try to protect their Copaxone franchise. In any event, this is good news for patients who have had success with Copaxone, who will now be required to give themselves 60% fewer injections. Of course, if there are any Copaxone patients out there who are masochists, this could be bad news, but hey, you can't please everybody…

♦ As I reported in my last Bits and Pieces post (click here), the powerful experimental MS drug Lemtrada was recently denied approval in the US by the FDA. The drug has been approved in most of the rest of the world, including, most recently, Mexico (click here). This action by the FDA has raised the ire of US MS patients, researchers, and clinicians alike (click here and here).

The FDA claims that it did not approve Lemtrada because the trials undertaken to prove the drug’s efficacy were poorly designed, but the FDA had previously approved the design of those very same trials. Lemtrada is a very controversial drug, as it carries a very high risk/reward profile. In trials undertaken by the drug’s manufacturer, Genzyme, as many as 50% of patients with highly active RRMS given Lemtrada were shown to have no evidence of disease activity (no relapses or new lesions) five years after they received their last dose of the drug. This is a startling success rate, but it comes at a price, as up to 30% of Lemtrada treated patients develop autoimmune thyroid diseases, and some develop a potentially fatal autoimmune blood disorder. It’s important to note that autoimmune thyroid disease is easily treated using hormone supplements, and the risk of the autoimmune blood disorder can be at least in part alleviated through careful monitoring.

Lemtrada is a powerful immunosuppressive agent which works by essentially rebooting a patient’s immune system. For patients with highly aggressive relapsing remitting disease, suffering some of the worst ravages of MS, the potential benefits of the drug could very well outweigh the known risks. I personally spoke to an MS neurologist who has my utmost respect about the FDA’s decision, and he was extremely dismayed by the agency’s actions, telling me of one patient who was being laid to waste by one of the most aggressive forms of relapsing MS. Not only did the drug stop the disease in its tracks, but the formerly MS ravaged patient recovered enough to actually be able to go back to work. Given this level of potential benefit, shouldn’t the decision as to whether or not to use Lemtrada be left in the hands of neurologists and the patients they treat? Seems the rest of the world thinks so, but not the FDA. Nope.

♦ In a disconcerting piece of MS news, a recent study has found that MS does indeed negatively affect life expectancy in the patients it strikes (click here). Researchers used insurance claims to identify a group of over 30,000 MS patients, and compared them to about 90,000 non-MS patients, finding that the MS patient population lived on an average six years less than their non-MS counterparts. The results of this study mirrored those done in some other parts of the world, but this was the first time such data was examined for MS patients in the United States. It’s important to note that this study looked at patient data from 1996-2009, and thus doesn’t include patients taking some of the newer, more powerful MS drugs. One can only hope that these drugs will positively affect MS patient longevity, and that future treatments will have an even greater significant positive impact. One can also hope that researchers concentrating on areas other than immunosuppression will come up with drastically more effective treatments that – gasp – actually address the root cause of the disease. Fingers crossed.

♦ In some better news, researchers in Australia have had initial success treating a patient with secondary progressive MS by increasing his immune response to Epstein-Barr virus (click here). EBV has long been suspected to play a role in the MS disease process, and this is the first research to directly target the virus in an attempt to alleviate multiple sclerosis. The research involved isolating a specific type of immune system cells, called “killer T cells”, from the patient’s blood, adding an experimental anti-EBV vaccine to them, and then growing more of them in the laboratory. The cells were then injected back into the patient over the course of eight weeks. The patient reported less fatigue, fewer leg spasms, better cognition, and improved use of his limbs. Of course, this was only one patient, and this research is in its very earliest stages. But hey, hope springs eternal…

♦ More news on the “infectious” front. Researchers following up on the discovery of a rare foodborne bacteria in an MS patient (click here) have infected rodents with that same bacteria, and found that the little varmints developed a disease very much like MS (click here). It’s long been suspected that infectious agents play some role in the MS disease process, a belief based on a convincing body of evidence. In fact, before attention shifted to the “autoimmune hypothesis” and pharmaceutical companies started making billions of dollars by producing drugs that tinker with the MS immune system, much if not most MS research was directed at finding the presumed infectious cause of MS. This area of research has been widely neglected for the past couple of decades, though, but interest in it seems to be picking up. From a patient perspective, this is a very good thing, for if one or more infectious cause or causes of MS can be positively identified we would finally be making great strides towards curing the disease. So, let’s pick up our MS research cheerleader pom-poms and shout in unison: “Frika Fraka, Firecracker, Shish Boom Bah, Infectious Agents, Infectious Agents, Rah Rah Rah!” Unfortunately, because of my debilitated physical state, I’m only able to pick up one of my MS research cheerleader pom-poms, but I expect the rest of you who are more able-bodied to do some vigorous two-fisted cheering.

♦ Although the above rhyme is about as poetic as I get, another member of the MS blogger community, Judith Mercado, is a far more accomplished poet, and has now published a book of her inspired work. Author of the blog “Peace Be with You” (click here), Judith writes her poetry in the ancient Japanese form of haiku, and I’ve long been a fan of her work. I was greatly honored when Judy asked me to provide a blurb for the back cover of her upcoming book, Peace on the Journey, and was of course happy to do so. If I may take the liberty of quoting myself, Judy’s “words resonate with wisdom and truth, and grace the reader with intimacy, honesty, and understanding.” While Judith’s blog often references her MS, the poems in Peace on the Journey are meant for a more general audience, anybody who travels on the sometimes gentle but all too often tumultuous path of life. Peace on the Journey is available in paperback and electronic Kindle version on Amazon (click here). Highly recommended.

♦ As promised, here is the earth shattering zipper news I promised the opening paragraphs of this post. An inventor seeking to help his physically challenged uncle has come up with “Possibly the Most Radical Innovation to Zippers in over a Century” (click here). Eventually joined by his mom and a mechanical engineer neighbor, inventor Scott Peters spent six years and went through over 100 prototypes before coming up with the Quickzip, a magnetically assisted zipper that only requires one hand to fasten. Be still my heart! The team of the inventors struck a deal with athletic clothing manufacturer Under Armour, which plans to start marketing Quickzip (now renamed Magzip) equipped clothing in the fall of 2014. I’m not one to encourage patent infringement, but I call on clothing manufacturers worldwide to meet this challenge and come up with their own easy fastening zipper innovations. Must I pick up my cheerleader pom-pom once again?

Here’s a rather, um, dramatic video produced by Under Armour highlighting the new technology…


RIP Heidi Sherman


Saturday, February 8, 2014

My New Ride

Well, I got myself a new rig. Yup, after five and half years the time has come to put my old wheelchair out to pasture, and to welcome a new mechanical monster into the fold. I’m a bit of a sentimentalist, prone to developing emotional attachments to things animate and inanimate, so consigning my old chair to mothballs comes with mixed feelings. The old guy has served me well, and was, after all, my first wheelchair. Don’t we always hold a special place in our heart for our firsts? First base hit on a baseball diamond, first kiss, first boink, first wheelchair – wait a minute, one of these things is not like the others.

I find it almost impossible to believe that five and half years have come and gone since that old chair and I first made our acquaintances, but I guess that just goes to show that time flies even when all of your days are not exactly filled with wine and roses. Time definitely speeds up as you get older. These days, I’ll retire to the bathroom with a good magazine, and when I come out it seems several months have passed. I’m pretty sure Einstein noted this same phenomenon in his general theory of relativity, much of which I’m fairly certain he came up with while sitting on the throne. There’s a reason men spend so much time in the bathroom. Lots of heavy thinking going on in there. Trust me.

My new chair is the exact same model as my old chair, a Quantum Q6000Z (click here) with the high-speed motor package installed (hee hee). Unlike my trusty old friend, which had a static seat, my new mechanical wonder comes equipped with all the bells and whistles. The seat tilts, reclines, the leg rests extend and rise, and the seat can elevate 10 inches. With the seat reclined fully and the legs raised to their maximum height I can just about lie flat on the thing. It’s almost like having an easy chair on wheels.

All of this, of course, makes the chair much more comfortable for extended periods of use, but, alas, there’s the rub. Five and half years ago I didn’t need all of these fancy features because I was much more ambulatory than I am now. In fact, when I first got the old chair I didn’t even use it around the apartment, only employing it for outdoor excursions. These days my ability to walk has been reduced to attempting maybe five or six treacherous cane assisted steps, and I’m finding the new chair a much more hospitable environment in which to plant my backside for long stays. And although I do appreciate all of the new features, they also serve to remind me of the full-court press being put on by the disease, and just why they call progressive diseases progressive – they progress. I have a real bone to pick with whoever came up with this demented concept; I’d really like to give them a piece of my mind. Hey, hold on, thanks to MS, I already have. Dammit.

Naturally, the new chair is taking some getting used to. It’s a bit larger than the old chair, due to all of the extra seating motors and stuff, so it’s a lot trickier getting it around the tight corners in my apartment, and it’s not quite as responsive when trying to dodge pedestrians on crowded city streets. Hey, their problem, not mine. What’s a few ruptured Achilles tendons and smashed kneecaps amongst fellow New Yorkers? If pedestrians walking on the streets of New York insist on having their eyes glued to the screens of their cell phones, I refuse to take any responsibility whatsoever for whatever damage comes to them if they happen to crash into my speeding chair. I’m just a maniacal gimp gleefully careening through the streets of New York. I abdicate all culpability in the matter. After all, they’re the ones with working limbs. Or at least they were before running into me. Dammit.

This chair doesn’t seem to have the same range as my old chair, in which I could travel about 15 miles. Because of the very wintry conditions we’ve had lately, I’ve not taken the new chair out for an extended trek, but it looks like this chair’s range is significantly less than the old one. Of course, my body isn’t up to my marathon jaunts of old, as my “good” joystick controlling hand tends to want to stop working after shorter and shorter intervals, thanks to that whole progressive disease thing. Dammit.

Astoundingly, the list price of my new tricked out wheels came to an eye-popping $29,000. Yikes! I could buy a pretty decent car for $29,000, or even two economy cars for that same amount. I can only imagine the profit margins on power wheelchairs. How much could all of the parts cost? $10,000, max? I’d much rather have spent the money on a nice “preowned” five-speed convertible BMW, but these days I’d qualify more as luggage than driver, so that’s out. Dammit.

Thankfully, my wheelchair vendor got me a discounted price on the new rig, and my insurance company picked up the majority of the tab. Between the new chair, all of the diagnostic tests I’ve gone through to figure out the mysteries of my disease, and the myriad treatments I’ve tried in vain trying to tame it, I guess I could be the poster child for why healthcare costs in the US are absolutely insane. But hey, at 50 years old I think I’d be more a poster man than child, despite my hard fought battle to maintain my youthful demeanor. Thankfully, you’re only young once but you can be immature forever, and that’s exactly how I intend to continue to play it, with a hearty "hey diddle diddle and a nah nah nah" to boot. Perhaps I’m delusional, but looking at the new chair as a really slick shiny toy to play with makes the whole concept of “me in a wheelchair” much easier to swallow.

Hey, whatever it takes. Dammit.
.


Wednesday, January 22, 2014

A Certain Kind of Crazy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Tuesday, January 7, 2014

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

Eyeballs

Eyeballs (Photo credit: Skrewtape)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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




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

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

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

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

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

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

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

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

Good grief…

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


Ciao for now…

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