A Bit, a Piece, and Some Photos…

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Sorry about the nearly two-week gap since my last post, but in addition to earthquakes, hurricanes, and my birthday, I've also been dealing with a persistent low-grade fever that seems to be related to the monthly IVIG infusions I've been receiving. My doctors claim that IVIG doesn't cause such long-term fevers, but the fevers do seem to have started when I started IVIG, and have increased in frequency in the five months that I've been on the stuff. As I'm sure most of you know, those of us with damage to our central nervous systems are especially sensitive to increased body temperatures, so these fevers have been draining both mentally and physically.

The real kick in the ass is that IVIG is the first treatment I've been on that has actually shown any benefit, having restored some strength to my extremely weak right side. Frustratingly, it doesn't seem to have stopped the progressing weakness on my left side, which is quite distressing since I use my relatively strong left side to make up for my extremely gimpy right side. Once the left side goes, I'm all out of sides, and thus shit out of luck, since I'm a mere Earthling and don't have the benefit of the additional extremities sported by some of our extraterrestrial friends. Damn, if only I was one of those six armed, six legged bastards from the planet Mu, but then again if I were I'd be forced to exist on a diet made up exclusively of tremendous brussels sprouts, and I absolutely detest brussels sprouts. Karen adores them, though, and it's only due to the magical power of love that our relationship has survived this calamitous obstacle.

Anyway, enough about me. I thought I'd share a couple of interesting MS related news items, and a new batch of photos that I've added to the Wheelchair Kamikaze photo gallery, which can be found on the left side of this blog. It's been a while since I've added any photos, so it's about time. I'll have a bunch more to post sometime soon, so stop needling me, see, stop riding me, or I'll have to reach through the Internet and sock you right on the kisser. Yikes, suddenly I'm writing like a 1930s movie gangster, so before any more such silliness ensues, let's get on with it…

· The first FDA approved stem cell trial involving multiple sclerosis patients is now underway at the Cleveland Clinic in Cleveland, Ohio (click here). The trial is using mesenchymal stem cells, harvested from a patient's own bone marrow, and then infused intravenously back into the patient after the cells have been cultivated and multiplied in a carefully controlled lab environment. Although this is a very small phase 1 trial, at least one of the initial patients is already reporting some improvements. The mesenchymal stem cells (MSC's) are thought to work by both regulating the body's immune response and initiating the repair of damaged nerve tissues, and offer the extremely exciting prospect of not only stopping the disease but also reversing some of the damage it does to the nervous system. Another small trial, conducted by Dr. Neil Scolding in England, reported encouraging results, finding that patients treated with intravenously infused MSC's showed stability and even some improvement in symptoms after one year (click here). Much larger stem cell trials are currently being readied throughout Europe, and are slated to get going later in 2011 (click here). Similar stem cell treatments are being offered in various overseas clinics at extremely high prices, but the outcome reports from patients who have traveled for these treatments have been mixed

· Yet more idiocy involving the use of medical marijuana to treat MS in the United States has once again made the news, this time in New Jersey, where an MS patient has been tried, convicted, and sentenced to five years in prison for growing 17 marijuana plants for his own use (click here). During his trial, the judge determined that the fact that the defendant has MS and was harvesting the plants as a form of medicine not be allowed to be told to the jury. The convicted man is now appealing the case to the State Supreme Court, and had been out on bail, but as of a few days ago is in prison beginning to serve his sentence. The kicker is that New Jersey now has a law allowing medical marijuana to be used for certain conditions, including MS, but it was passed after this man was first arrested. As I've written about previously (click here), the draconian anti-marijuana laws here in the US - enacted in the mid-20th century largely to protect the cotton industry from the growers of hemp - don't even allow for the testing of pharmaceutical products derived from marijuana, such as Sativex, an anti-spasticity spray available throughout Canada and much of Europe. Sheesh…

Okay, now for the photos I know you've all been waiting for with bated breath. These were all taken between within the last 12 months, with a camera mounted on the arm of my wheelchair. Most were shot in either Central Park or Hudson River Park. I hope you like them. Please click on the thumbnails below to view a larger image. I'd love to know if you have any favorites, or even if you happen to despise any of them, so please feel free to leave some comments…

The Horrible and The Miserable

In his 1977 Academy Award-winning cinematic masterpiece Annie Hall, Woody Allen explains his belief that the entire population can be broken down into two groups, the horrible and the miserable:

Yes, the horrible are "terminal cases, blind people, the crippled…", and the miserable are everybody else, Woody advises Annie, so you should be happy to be miserable.

When I first saw Annie Hall, decades before I was fated to join the ranks of the horrible, Woody's analysis of the human condition seemed perfectly on target, so much so that I wanted to scream "Yes!" at the screen when I first heard this philosophy so succinctly put to words. Annie Hall is a bittersweet comedy, though of the most illuminating sort, and Woody's words were meant to be sardonic, but the teenage me found them to be in perfect sync with my own observations about our society and the world at large. It did seem to me, as Henry David Thoreau wrote, that "most men lead lives of quiet desperation, and go to the grave with the song still in them."

Yes, it's safe to say that I wasn't the most happy-go-lucky young man, and the divide between the miserable and the horrible fit well with my cynical and angst ridden personal philosophy. Not that I was a sad sack, mind you, as I was always equipped with a keen sense of the absurd and thus a lively sense of humor, but looking around me I saw a world filled with adults who to my eyes had long ago forsaken what they wanted to do for what they had to do, and who were so anesthetized by the repetitious machinations of society that this tremendous sacrifice barely even registered with them.

So, by Woody's definition, I would just have to be content with being one of the miserable. The thought of somehow one day becoming one of the horrible was, well, just too horrible to contemplate. The idea of having to deal with severe physical infirmity on top of the emotional grind of everyday life would be simply unendurable. Yet, now that I find myself firmly in the ranks of the horrible, I'm less miserable than when I was one of the miserable. How strange, and how completely unexpected.

Back when I was lucky enough to be one of the miserable, I did a pretty good job at embodying that designation. During the first decade or so of my adult existence, my determination to not succumb to the drudgery of 9-to-5 led me to live a rather Bohemian existence. I spent several years as the lead singer of a punk rock band, working part-time jobs to earn just enough cash to keep a roof over my head and a belly at least half full of food (the other half taken up, more often than not, by vodka and beer). I cultivated the uncanny ability to be able to identify the one female in a crowded room who would be most toxic to me and then fall madly in love with her, a surefire ticket to misery. Though I was living a life of relative freedom and the potential for having a grand old time abounded, my natural proclivity towards anxiety and depression kept me in a nearly constant state of emotional turmoil.

Soon enough, as I got older, responsibility started creeping in, and I was forced to emerge from the nocturnal underground and try my hand at making a living. Somewhere along the line I'd earned a degree in Broadcasting and Film, and an odd confluence of events found me living in Fort Lauderdale, a very accidental Floridian. I was a stranger in a strange land, and with few remaining options, I put my degree to use, finding work in the production studios of the local cable television company, a humble start to a nearly 20 year career in the TV and video production business.

Through a series of ever increasingly responsible jobs, I found some measure of professional success, but always harbored the gnawing feeling that I had somehow strayed very far from my path. My youthful dreams of living large as a rock star or writer slipped out of reach in my rearview mirror. Though I could soon enough afford to placate myself with fast cars and shiny objects, I felt an increasing sense of suffocation. I eventually wound up in a job that required me to wear a necktie (ack!), and I vividly remember the pit I felt in my stomach each morning as I stared into the mirror watching myself literally tying a noose around my neck.

Somewhere along the line I'd blindly capitulated and crossed that line between "want to do" and "have to do". Despite my quiet desperation, I couldn't see a way clear of my situation. Now there were bills to pay, a lifestyle to be maintained, femme fatales to be entertained. I was stuck in a prison of my own making, definitely one of the miserable, but still thankful to not be one of the horrible.

And then, one day, I was. I'd been back in my hometown of New York about four years, and was working in a high profile job that I actually didn't hate (and one for which I did not have to wear a necktie). Having finally learned my lesson, I married a wonderful woman, and settled into a very pleasant existence. Still, I harbored the unsettling feeling of somehow being false to myself, as if I'd been shoehorned into living someone else's life. During my walking commute to work, I'd constantly fantasize about a life spent writing, or taking photos, a life full of want to do's rather than have to do's.

One cold day in March 2003, while walking my beloved pooch Stella, I realized I was limping, my right knee buckling with each step I took. A few doctors’ visits and an MRI later, and I soon found myself being informed that I had multiple sclerosis.

Holy shit.

Welcome to the horrible.

As it turned out, my disease was of the progressive type, and aggressively progressive at that. Less than four years after my diagnosis I was forced to stop working, and about a year after that a wheelchair entered my life. If you had used my past as a predictor of how I'd react to this dreadful new reality, the projected outcome would not have been pretty. Had I been told before my diagnosis of what was about to come, and was then given the choice to either plunge forward or gracefully check out, I might very well have chosen the latter. But somehow, despite my forced migration from the miserable to the horrible, I not only survived but thrived, surprising not only myself but also those who knew me best.

Although MS (or whatever it is, as my diagnosis is more up in the air than ever) has imposed ever-increasing limits on my physical abilities, within those limits I've found a kind of freedom, one that was sorely missing when I was healthy and a so-called productive member of society. Looking back from the vantage point of the horrible, I can see that the life of the miserable is filled with an almost limitless number of options, so many that they can become paralyzing in and of themselves, as choosing one closes the door on so many others. The result can be a kind of blindness, a resignation to keep following a familiar but ultimately unsatisfying path.

Now that I am partially physically paralyzed, and my options limited in a very tangible way, I find in some ways that my existence is easier to navigate. Living within some very real boundaries in fact affords a certain amount of freedom, as the structure imposed by a debilitating illness invites one to use that structure as the skeleton upon which to build a new and different life. I have been freed from the expectations of the working world, a world in which we are often defined not so much by who we are but what we do. Apart from that world, I am free to define myself, albeit within the limits imposed by my disease, by what exists within. Thus, who I am, rather than what I am, takes on the utmost importance.

Just as a gifted poet limited to the strict rules of haiku can create combinations of words that have the power to take the breath away, attempting to live a meaningful life within the strict confines imposed by illness has allowed me the chance to rise above my previous foibles and weaknesses, to strive for some measure of triumph in the midst of mounting adversity, to try to be a better me. That effort has allowed me to rediscover parts of myself that had long ago withered from lack of attention, and to reconnect with the person I was before the burdens of adulthood and its attendant responsibilities had tugged and twisted that fresher version of myself almost beyond recognition.

Make no mistake, I am not saying that this damned and detested illness has conferred upon me any benefit that I could not have conferred upon myself while healthy, given a dose of mental strength and fortitude that I was lamentably unable to muster. This illness, any chronic illness, is a curse, a vile and venal monstrosity that is the very definition of horrible. But despite this beast attempting to consume me, I can endeavor to rise above, to mindfully claim each moment as my own, and to control my emotions rather than have them control me, thereby creating my own reality and snatching it from the gaping maw of illness.

Sick or healthy, miserable or horrible, we all have but brief lives to live. Those of us with the misfortune of being saddled with illness are only too aware of this fact, our mortality laid raw before our eyes as our illnesses insidiously do their dirty work. This keen knowledge of the frailty of existence can and should be used as a great motivator to make the most of each day, to live each and every moment to the best of your ability. This isn't to say that every sick person has to accomplish some kind of daily miracle; there are some days when the best of my ability amounts to lying in bed watching the Marx Brothers. It is often enough to acknowledge that time is fleeting, as my weakening left side constantly reminds me. While this knowledge can and does terrify, it can also fortify and strengthen the resolve to make damn sure that although illness may claim my body, it can never claim that spark of life that animates it and makes me, me.

The horrible and the miserable. Turns out we're all in the same boat. Might as well start rowing…

Bits and Pieces-It's Been A While Edition

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It's been almost 2 months since I did my last Bits and Pieces post, so I figured it's high time I put together another collection of interesting (at least to me) links and other tidbits of information mostly having to do with Multiple Sclerosis.

As usual, there's been a steady stream of news related to MS, from outrageous behavior by Big Pharma to MS drug info to insights into possible causes of the disease. Believe it or not, I find such info a refreshing distraction from the nonstop barrage of news about the idiots in Washington doing their utmost best to screw up a perfectly good country, and a world that seems to be flying apart at the seams.

It's a sad commentary when plumbing for research about a miserable disease is more enjoyable than simply perusing the latest world and national news. One of Shakespeare's most famous lines is, "The first thing we do, let's kill all the lawyers". These days, he might be more apt to write, "The first thing we do, let's kill all the politicians". Not that I'm advocating violence, as I'm an extremely nonviolent person, but metaphorically, at least, all of those supposedly in charge, every single last one of them, need to be put out of our misery…

As for me, I'm continuing my monthly IVIG infusions, which do seem to be having some benefit. Unfortunately, for the last month or so I've been battling a weird low-level fever that is really pissing me off. Feeling like crap for weeks on end is no fun, but this coming week I have several doctors’ appointments that hopefully will get this thing figured out. Otherwise, I may soon be urging "The first thing we do, let's kill all the doctors"…

Anyway, on with the show. I hope you find the following items to be scintillating and effervescent. On second thought, that may be that's asking a bit much, so at the very least I hope you'll find these tidbits worthy of your attention…

· This article (click here), from the New York Times, details yet more bad behavior by the Big Pharma companies. It seems that the pharmaceutical companies have been sponsoring drug trials designed not so much as to investigate a drug's efficacy, but to popularize the drug among the doctors taking part in the trial. To this end, drugs that have already been approved by the FDA are "investigated" in trials designed not by the company's research departments, but by their marketing people. Called "seeding trials", these sham investigations’ primary purpose is to familiarize physicians with pharmaceutical products in the hopes that they will increase writing prescriptions for them.

As the article states, "In a typical seeding trial, a pharmaceutical company will identify several hundred doctors and invite them to take part in a research study. Often the doctors are paid for each subject they recruit. As the trial proceeds, the doctors gradually get to know the drug, making them more likely to prescribe it later."

To say that the ethics of this practice are questionable would be quite the understatement, as patients participating in these trials believe they may be contributing to the greater good, when in fact all they're doing is contributing to the bottom line of the pharmaceutical companies. Patients have died as a result of these trials, yet the government is powerless to do much about them, since most of the rules governing trials were written over 40 years ago, when most medical research was carried out by academic facilities. These days, the vast majority of research is conducted by for-profit companies, leading to outrageous abuses like seeding trials that blatantly manipulate patient populations strictly for financial gain. Is there any wonder why almost every chronically ill patient I know oozes with cynicism regarding the entire medical establishment? Shame on all involved…

· Speaking of the drug companies, some of them have suffered setbacks in bringing oral MS medications to market. Teva Pharmaceuticals, makers of Copaxone, have been hard at work trying to get their new oral MS compound, Laquinimod, through the trial process for eventual approval by the FDA. The results of the latest Laquinimod trial (click here) showed that it worked no better than placebo, severely impacting the drug's eventual chances for ever being made commercially available. Of course, this news was reported in the business pages, as it also negatively impacted Teva's stock price, which fell precipitously. My heart bleeds…

Meanwhile, German drugmaker Merck has decided it will not seek approval of its oral drug Cladribine for use in combating Multiple Sclerosis (click here). Cladribine is an older drug that has been used to treat leukemia, and although it appeared somewhat effective in reducing relapses in MS trials, the drug has a nasty side effect profile, and the company decided that Cladribine probably wouldn't be competitive in the MS drug marketplace.

Another negative trial demonstrated that simvastatin, otherwise known as Zocor, was ineffective as an add-on treatment to Interferon B (Rebif, Avonex, and Betaseron) when used on MS patients (click here). Earlier studies had hinted that the statin drugs, currently used to control cholesterol levels, might be beneficial to MS patients, an idea that this study apparently disproves.

The cost-effectiveness of the MS Disease Modifying Drugs in general, at least here in the US, was called into question by this study (click here) citing their extremely high cost versus their moderate long-term efficacy. The study notes that the interferon drugs cost three times as much in the US as they do in the UK, and that if costs in the United States could be brought more in line with those paid by the rest of the world, the drugs could then be deemed cost-effective. Why do the pharmaceutical companies charge three times as much for the same drug in the United States when compared to other countries? Because they can. Regulation bad. Price gouging good…

· It's long been thought that viruses play some role in starting the MS disease process. Several new studies certainly seem to bear this out, with the primary culprits being viruses in the herpes family. Epstein-Barr virus (EBV) in particular has been singled out as very likely being in MS instigator, with some researchers going so far as to state that if a person isn't infected with EBV, they will not get MS.

EBV is the virus that causes Mononucleosis, but often those carrying the virus never had Mono, as EBV infection can manifest as a respiratory infection, and can even sometimes be completely asymptomatic. Most of the population (upwards of 90%) carries EBV, so EBV infection alone can't cause MS, but several new studies to offer intriguing insights into the role that the virus may play. This paper (click here) offers a comprehensive overview of EBV and MS. It's kind of a heavy read, but offers a keen analysis of the available information. This study (click here) demonstrates that MS patients were almost 3 times as likely to be infected with both strains of EBV (there are two distinct types of the virus) as healthy control subjects. Another study, out of Australia, demonstrates that people with a particular genetic subtype are 20 times as likely to develop MS when infected with EBV as is the general population (click here).

Epstein-Barr, though, is not the only virus seemingly implicated with MS. A study done in Taiwan, which looked at hundreds of thousands of patients, showed that people who suffered an outbreak of shingles were four times as likely to develop MS within the year (click here). Shingles is a very painful skin condition that is caused by the Varicella Zoster, the same virus that causes chickenpox. Varicella Zoster is a cousin of EBV, as both are herpes viruses. Another herpes virus that seems to be related to MS is HHV-6 (Human Herpes Virus 6), which is talked about extensively in this paper (click here).

So, by what mechanism might these viruses play a role in the development of MS? It certainly seems that a genetic predisposition is required, and this article, "The Insanity Virus" (click here) offers a tantalizing theory that helps tie all of this together. If you don't read any of the other links in this post, please read this one, as I believe "The Insanity Virus" is a MUST READ for anybody with MS. The title of the piece refers to schizophrenia, but MS plays a prominent role in the article.

In the years since the human genome has been mapped, it's been found that over 90% of our DNA is "junk", and not needed to make a human being. A lot of this junk is comprised of the remnants of ancient retroviruses, which at some point in our evolutionary history were infectious, but over the course of hundreds of thousands of years became incorporated into our DNA as what had been thought to be harmless pieces of deactivated genetic material.

Now, research is showing that this supposedly harmless retroviral DNA can suddenly be switched "on" by the presence of chronic infections just like those represented by the human herpes viruses. Once this long dormant genetic material has been activated, our very own cells produce viral proteins that send our immune systems into attack mode, thus leading it to go cannibal and set out destroying a patient's own central nervous system. This is a fascinating revelation, and one that can explain some of the major mysteries regarding the roots of Multiple Sclerosis. Truly, the importance of these findings cannot be overstated.

· On the CCSVI front, research seems to be moving steadily along. This September, some major CCSVI research papers are expected to be published, and several of the ongoing CCSVI research projects are expected to reveal preliminary results at the upcoming ECTRIMS (European Committee for Research and Treatment in Multiple Sclerosis) meetings in late October.

A very good paper was recently published that gives a very balanced overview of the current state of CCSVI research, both pro and con (click here). This is another very worthwhile read.

Many MS patients are aware that former talk show host Montel Williams recently underwent CCSVI treatment venoplasty. He is going to divulge the results of his procedure on a TV special cohosted by celebrity physician Dr. Oz, currently scheduled for September. Montel recently made an appearance on Fox Business News, during which the conversation steered towards his MS "surgery" (click here for video) . His comments offer a big tease about the results of his procedure, which apparently were quite positive. Unfortunately, you'll have to sit through a commercial first, but once that's done, if you drag the slider to about 2 min. and 30 seconds into the interview, you'll find Montel's intriguing comments on his CCSVI procedure.

Related articles

• Bravo? Not Really. (fool.com)
• FDA's safety concerns force Merck KGaA to kill cladribine MS program (fiercebiotech.com)