Another Day in Paradise

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The day begins. My alarm clock goes off, and as consciousness slowly seeps in I find that I have been sleeping on my stomach, as is my habit. Flipping over is no easy affair, as my useless right arm and leg are dead weight, and, as an added bonus, the spasticity that attacks them makes them extremely stiff as well. I know from experience that simply trying to roll over like any normal person just won't work. I must will my right leg to bend at the knee, creating the momentum needed to set my body in motion. After a considerable amount of effort, my right leg bends in a sudden spasm, and as it does so I use the force generated to get myself situated first on my side, and then, finally, on to my back. The first success of the day.

That success does not come without a price, though. The maneuver results in searing pain that radiates excruciatingly from my hips. I suffer from Avascular Necrosis (click here), a rare side effect of intravenous steroid use that results in the death of the bones in the major joints. I have the condition in both hips and both shoulders; these days I'm living with the literal equivalent of two broken hips, as both of my femoral heads have collapsed. At their worst, my hips feel like they're made out of a sadistic mix of broken glass and blazing razor blades, producing a level of pain I formerly had no idea even existed. Some knowledge is best left unlearned.

The pain is bracing, and serves to knock some of the drowsiness out of my head. Not all of it, mind you, because the fragility of my joints dictates that I sleep in spurts, as every time I unconsciously adjust my body position during the night I am awakened with a generous jolt of ouch. Finally on my back, I clumsily reach for the alarm. As I do so, my left shoulder makes sure to remind me that it, too, is afflicted.

Next up is wrestling my rebellious body into a sitting position on the side of the bed. Aside from some pain, my left leg doesn't present much of a problem and makes the trip to the edge of the mattress under its own power. My right leg requires a little help from my left arm and hand, which I then use to hoist myself into a sitting position with the help of the handy dandy little railing that is attached to my bedside. I reach for the nightstand to grab the glass of pills that had been placed there the night before, a pharmaceutical cocktail designed to combat pain, spasticity, inflammation, bladder issues, and thyroid deficiency (and enrich the companies that make the meds).

After downing the pills with a slurp of water, I sit for several moments summoning the will to slowly and painfully uncurl my body into a standing position, after which, cane in hand, I'll take the two or three awkward steps to my wheelchair for the 10 foot trip to the bathroom. The anticipation of the effort required to complete these actions makes the notion of simply staying in bed quite appealing. But no, while I'm still able, I'll not consign myself to a bedridden day. There may be plenty of those forced upon me at some later date, the thought of which I try my best to put from my mind. Instead, still sitting on the side of the bed, I say to myself, out loud, "Another day in paradise…"

Of course, that phrase is uttered with a tremendous dose of sarcasm, but the words also serve to remind me of a simple truth. Today is the only today I'm ever going to have, regardless of the challenges it holds. Once it's gone, it's not coming back. It's nonrefundable, nontransferable, and has no shelf life whatsoever. Despite the value we place on so many shiny objects, the most precious commodity of all is time, as our personal allotment of it becomes scarcer with each passing second.

With luck, work, and savvy you can amass reserves of cash, or gold, or precious jewels, but time defies hoarding, instead forever slipping through our grasp despite whatever strategies we may employ to hold back its relentless flow. We've developed multibillion-dollar industries devoted to denying the passage of time, or at least the toll it takes on the physical body, but no amount of Botox or plastic surgery can delay the inevitable. On the contrary, the older we get it seems that our experience of time speeds up. That gloriously long two months of summer vacation we experienced as 10-year-olds now flashes by in what feels like a matter of moments. We are like rocks tumbling down a mountain, picking up speed as we go, racing ever faster towards a common end. One hundred years from now the world will be filled with all new people, the luckiest among its current occupants remembered by a precious few. We are but tiny specks in the vastness of an unknowable universe, each individual existence as inconsequential in a cosmic sense as a lit match viewed from a distance of a thousand miles.

Given that reality, each new dawn is indeed another day in paradise, aching hips and petrified limbs be damned. Those of us unfortunate to be burdened with disease should be all the more aware of the dearness of the moment at hand. When healthy, it's easy to take the tremendous good fortune of simply being well completely for granted, concentrating instead on all of the perceived impediments to our so-called God-given right to happiness. In fact, the right to happiness is a gift we give ourselves, by the choices we make and the actions we take. Yes, shit happens, but the way we choose to perceive that shit is what defines it as good or bad, happy or sad. No circumstance is inherently a disaster, or for that matter, a triumph, it is only our perceptions that make them so.

When I was healthy I used to not only sweat the small stuff, but agonize over it. Each setback was a calamity, each broken relationship or career impediment the vehicle for a descent into a pit of anxiety and depression. Looking back now, from within a deteriorating body, I can clearly see that all of those perceived misfortunes often led me to completely unexpected and usually improved circumstances, and that the only real obstacle to my finding contentment was in fact me and my insistence on clinging to the negative. While I was burning a torch for some lost love, I foolishly disregarded chances to find new and possibly truer affections. While stressing over a career that didn't always go as planned, I was blind to opportunities that in retrospect seem crystal clear. By concentrating on loss, I denied myself gain, time and time again.

Now, the inferno of illness has thrown light on to the folly of such behavior. Faced with physical limitations that are completely beyond my control, I am determined to make the most over that which I can still influence, my attitude and my actions. I'll never claim that my getting sick is some sort of blessing, as such inanities makes me ferociously nauseous. Getting sick sucks. Dealing with constant pain sucks. Experiencing creeping paralysis as a disease insidiously whittles away at my body sucks, sucks, sucks. I can think of no action so disgusting that I wouldn't undertake it if it held even the slightest chance of beating back this monster. If crawling up the rectum of an incontinent hippopotamus might somehow make me better, then coat me in Vaseline and get me to the nearest zoo.

Despite all of the opportunities for misery that chronic illness presents, or, maybe because of them, I am determined to squeeze the most out of however much precious time is left while I am still able, hopefully years rather than months. This is not to say that I am some sort of saint, sitting in an state of ethereal bliss in the face of what very well could be a dire future. Rest assured, I do my share of griping, moaning, and complaining. I am also not one of those patients inclined to attempt to scale Mount Everest or to be the first person to cross the Atlantic in a floating electric wheelchair. There are many days that the best I can muster is watching Godzilla movies in my underpants. But I am resolute that on such days, I will at least try to derive as much contentment as is humanly possible while watching Godzilla movies in my underpants. And, believe me, if you fully occupy the moment, and let neither thoughts of the past nor the future pollute the present, watching Godzilla movies in your underpants can be a very good thing indeed, especially if you have a box of chocolate covered pretzels to munch on while watching.

Yes, it's another day in paradise. I've come to realize that paradise is not a destination, but rather an environment that is created from within. Sitting on the side of my bed at the beginning of each new day, waiting for the pills to kick in, I try to remind myself of that fact, and some days it's much easier than others. But even on my worst days, when the walls and buttresses within reveal the chicken wire and chewing gum that they're made from, I understand that there's really not much choice. Time is fleeting, and we don't get bonus days for time spent miserable, however justified that misery may be. The path to paradise or perdition is one and the same; it’s how you choose to perceive the view along the way that makes all the difference.

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Bits and Pieces: I'm Grumpy Edition

Sorry about the long gap between these scribblings and my last post, but I've been dealing with computer issues for the better part of this week. When I say computer issues, I'm talking specifically about some kind of malevolent computer virus that is causing all kinds of wicked little jerks and twitches to afflict my electronic ball and chain.

Despite a robust antivirus program, and overly intrusive firewall, and numerous anti-malware scans of varying intensities (the very fact that the word malware exists proves that Machiavelli was right, and evil does indeed lurk in the hearts of man), my computer has nevertheless contracted some kind of illness, the intensity of which lies somewhere between a sniffle and the flu. Trying to rid the device of this bug has in turn infected me with an obsessive compulsion to weed it out and smash it to bits.

I'm maddeningly frustrated to report that so far all of my many hours of efforts have been in vain, and, in order to avoid a violent cerebral hemorrhage, I may have to call in someone who actually knows what they're doing. Since I like to live under the delusion that I know what I'm doing no matter what it is I happen to be doing, this last step will be taken only as a last resort, and with bitter resignation, like General Lee surrendering at Appotomax Courthouse. Such a rancorous humiliation…

Despite my current state of semi-sane, glassy eyed distraction, I offer up to you the following selection of noteworthy items, most of which have something to do with MS or disability. After which I will once again descend into the writhing bowels of war…

§ I came across a new (at least, new to me) MS blog called "My New Normals" (click here), which I find to be well-written, insightful, and very well designed. Written by an MS patient named Nicole, the blog features succinct accounts of Nicole's experiences living with MS, told in an accessible and direct manner that contains many truths and more than a little bit of wisdom. I appreciate her ability to sum things up quite succinctly, quite unlike my predilection for writing long-winded novellas. Kudos to Nicole, and welcome to the blogosphere (horrible word, sounds like something that might be embarrassingly launched from a nostril after a particularly energetic sneeze).

§ This past week, the ECTRIMS/ACTRIMS (European and American Committees for Treatment and Research into Multiple Sclerosis) meetings were held in Amsterdam. This is the biggest annual medical conference devoted solely to MS, and was attended by researchers and clinicians from all over the world. In addition to the usual avalanche of MS drug trial data released, topics at this year's conference ranged from the role of parasites in the treatment of MS, to CCSVI, to stem cell therapies, to genetics. There's an awful lot of info to digest, and what with my "war of the viruses" going on, I haven't been able to devote the proper time and attention needed to process all of this new information, so I'm afraid I'll have to weigh-in at some later time. Luckily, though, the MS society sent Julie Stachowiak (who writes the excellent MS column at About.com) and video producer Kate Milligan to Amsterdam to produce a blog about all of the research developments discussed at the conference (click here). They did a terrific job giving a day by day and blow-by-blow account of this massive conference, breaking down the info into understandable written posts and video pieces. Highly recommended reading/viewing.

§ Speaking of Julie Stachowiak, at her regular About.com gig, she's blogged about her recent experiences trying LDN as a treatment for her MS (click here). LDN stands for low dose naltrexone, a popular "alternative" treatment for MS. Naltrexone is a drug that is typically used to treat various addictions (inhibits the workings of the brain's opioid receptors), but in very low doses has been purported to have beneficial effects in treating MS and other chronic illnesses. Despite a tremendous amount of anecdotal testimony from MS patients who swear by the drug, there's been very little hard research done on LDN, primarily because the drug is old and off patent, meaning that there aren't billions of dollars to be made marketing it to patients. Therefore, there is no financial incentive for pharmaceutical companies to sponsor trials testing the efficacy of LDN, and since these days Big Pharma funds the vast majority of medical research done in the US, if they're not interested, treatments like LDN simply languish in a sort of medical twilight zone, tantalizing patients with promise but with no way to prove their worth. Truly a pathetic state of affairs, and one which only seems to be getting worse. In any event, Julie's relating of her experiences taking LDN makes for interesting and informative reading.

§ I'll be one of the hosts at a CCSVI MStery fundraising party being put on here in New York City on November 4, at the Hudson Eatery, located on 57th St. between 11th and 12th Avenues. Held on behalf of the Buffalo Neuroimaging Analysis Center (BNAC), which is doing extensive groundbreaking research on many aspects of CCSVI, attending the party and donating to the cause is a fun way to help further the CCSVI movement. The party will feature a silent auction which will include four of my photos (really nice 16 x 20 matted prints), the first time any of my photographs have ever been up for sale (yikes!). Dr. Robert Zivadinov, the head honcho and lead researcher at BNAC will be in attendance, and will discuss much of the CCSVI research he presented at ECTRIMS. If you're in the New York City area and want to have a great night out on the town while at the same time doing your bit for CCSVI research, you can register for the party by (clicking here). If you don't live in the area, or otherwise can't attend, but would still like to make a donation to BNAC, please do so through my "party host page" (click here), so that BNAC knows that the support has come from a Wheelchair Kamikaze reader. If you are be unable to attend the event but would like to bid on any of the auction items, you can do so via the magic of the Internet (click here). I look forward to meeting everybody who attends the party, and extend my thanks to all those who can't attend but still do their part to help further BNAC's research.

§ One other New York City-centric item: The Multiple Sclerosis Research Center of New York (headed up by my personal neuro, Dr. Saud Sadiq) will be holding its 14th annual free patient symposium on October 30, at the New York City Hilton Hotel on Sixth Avenue and 52nd St (click here). This year, the theme of the symposium is "Healing MS", which is, after all, the point of the entirety of MS research (at least I hope it is-there's always the "vast sums of money to be made off of desperate people" angle, which I can assure you plays no role in the very benevolent heart of Dr. Sadiq). These symposiums are always packed with valuable information, and offer glimpses into some of the cutting-edge research being done by the facility, in addition to reviews of the latest trends in treating multiple sclerosis. Topics scheduled to be discussed include preserving cognition, optimizing medical treatment, a question-and-answer on controversies (gee, wonder what those might be?), and, of course, healing MS. If you're in the area, this is an excellent opportunity for self education (and a free brunch).

§ I leave you with the following group of intrepid daredevils, The Red Wheelies, a British mobility scooter formation display team, who hold the current Guinness world record for "the greatest distance covered in 24 hours by a motorized scooter or wheelchair" (click here). While that achievement is indeed impressive, I'm more taken with their thrilling precision maneuvers, kind of like an air show but, um, on the ground and much slower…






With that, I take my leave, off to continue my conflict with my damned computer, which froze up while I was writing this last night, causing me to lose several hours work and delaying this post by a day. As far as my struggle with the computer virus goes, as Winston Churchill said, "This is not the end, this is not even the beginning of the end, but it is the end of the beginning…" Or, as my grandmother said, quite often, “Oy vey"…

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Progressive MS: A Deep Mystery Beginning To Reveal Its Secrets?

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The words "progressive multiple sclerosis" carry with them a sense of dread and panic for most MS patients. When I was newly diagnosed, I of course immediately hit the Internet, and discovered that there were four primary types of multiple sclerosis: Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS), Primary Progressive MS (PPMS), and Progressive Relapsing MS (PRMS). It only took an hour or so of reading for me to realize that the progressive forms of the disease (SPMS, PPMS, and PRMS) were very scary indeed. Not that RRMS is any picnic, but patients with progressive MS have few if any treatment options, and generally suffer much more aggressive disease and a quicker rate of disability. My mind immediately rejected the notion that I might have one of these forms of MS, but as time played out and the course of my disease became clear, I was given the diagnosis I had come to suspect but refused to accept: PPMS. Now, after eight years, that diagnosis itself has come into question (click here), but still, the clinical course my disease most resembles is PPMS.

A spin around the Internet MS forums quickly reveals that there is much confusion about progressive MS among much of the MS population, especially the newly diagnosed. It's extremely important for patients to understand the differences between the MS subtypes, as treatment and symptom management options vary widely, and informed decisions can only be made if a patient has a good grasp on just what they're dealing with. There are several good sites that explain the differences between the MS subtypes (click here for one), so I won't go into an in-depth discussion of their differences here. In a nutshell, RRMS (which represents about 85% of the MS population) is marked by the disease course that features distinct relapses and remissions. During a relapse, an RRMS patient experiences an acute worsening of symptoms, often to a very debilitating degree. This is followed by a period of remission, when the patient reverts more or less back to normal, sometimes suffering from residual effects that remain from their previous relapses. After a period of years, a majority of RRMS patients transition to SPMS (click here for more info), when they stop experiencing relapses and remissions and instead start suffering from a steady increase in disability, with none of the distinct "ups and downs" of RRMS. In addition to a lack of relapses and remissions, SPMS patients also experience a severe reduction in the amount of inflammation seen in their central nervous systems, despite the ongoing nature of their disease.

PPMS patients (about 10% of the MS population) never experience periods of relapses and remissions, but instead suffer a steady decline in functionality from the onset of their disease. PPMS is distinct in many ways from the other forms of MS, so much so that some doctors and researchers think that it may in fact be a completely different disease. Unlike RRMS, PPMS attacks men and women in equal numbers. MRIs reveal that PPMS patients generally have less lesions than RRMS patients but usually exhibit more spinal lesions, and even though their lesion load is less, quite often their disease is much more aggressive and debilitating. Additionally, spinal fluid analysis is usually less definitive for PPMS patients, as they sometimes don't exhibit the telltale O-bands seen in about 95% of RRMS patients. Additionally, PPMS patients don't exhibit the widespread central nervous system inflammation that is one of the hallmarks of RRMS.

PRMS (about 5% of the MS population) is the rarest common form of MS, and patients afflicted with it experience a steady decline punctuated by acute exacerbations, which are not followed by remissions. This is generally the most aggressive form of the disease.

In my 8+ years of haunting various MS Internet forums, I've seen many patients confused about the differences between SPMS and PPMS, often wondering which variant of the disease they are suffering from. The difference is actually quite clear; if a patient has ever experienced a period of relapses and remissions, then they by definition cannot have PPMS. Anybody who has previously received a definite diagnosis of RRMS, and has experienced exacerbations followed by periods of relief, but now finds that they are now facing a decrease in relapses but a steady increase in symptoms, is likely transitioning to SPMS.

Almost all of the approved MS drug therapies are meant for RRMS patients and are effective to varying degrees in reducing the amount of relapses suffered by the patients taking them, benefits which are accomplished by modulating or suppressing the systemic immune system. At the present time, there is only one drug approved for SPMS patients, the chemotherapy agent Novantrone, and there are no proven effective treatments for PPMS. Often, MS Neuros will try some of the approved therapies on their progressive patients (usually their SPMS patients), in the hopes of positively impacting the disease, but these attempts generally prove to be unsuccessful.

Because of the aggressive nature of progressive multiple sclerosis, and the extreme difficulties in treating it, progressive MS remains a frightening proposition for patients and a confounding problem for the physicians trying to treat them. Often, treatment is limited to symptom management because none of the approved MS treatments, most of which work in one way or another to reduce inflammation in the central nervous system, have any positive effect on progressive MS patients who typically exhibit little or no CNS inflammation. One of the prevailing mysteries of MS is why, in the face of this lack of inflammation, the disease continues to progress without hesitation.

Research conducted over the past few years has started to shed light on some of the mechanisms at play in progressive MS. It appears that, at least in some of progressive MS patients (and especially in SPMS patients), a kind of rogue immune system develops within the patients’ central nervous system, which operates independently from the greater systemic immune system (click here, here, and here). This "immune system within an immune system" is comprised of lymphatic tissue (the kind that produces immune system cells) which develops within the CNS, safe behind the blood brain barrier. These lymphatic tissues produce immune cells (primarily B cells), which it is believed drive the continuing disease process seen in progressive MS. Because this process occurs behind the blood brain barrier, which functions to sequester the CNS from toxins and pathogens that might attack the rest of the body, it is protected from the drugs effective in treating RRMS, which work by down regulating the systemic immune system but have no effect within the central nervous system itself. This explains why drugs like Tysabri, which despite its known potential problems is very effective in treating RRMS (click here), have little or no efficacy in treating the progressive forms of the disease. The drugs simply have no access to the self-contained immune process that appears to be taking place within the central nervous system in some progressive MS patients.

The implications of these discoveries are tremendous. They suggest that therapies delivered directly into the central nervous system may be effective in treating progressive MS, and indeed, one study has demonstrated that intrathecal (spinal) injections of methotrexate do seem to be effective in treating progressive MS (click here [full disclosure, this study was conducted by my neuro, Dr. Saud Sadiq]). The NIH is currently conducting a study testing the effectiveness of intrathecal Rituxan in SPMS patients (click here). This also illustrates the importance of research done very recently that has demonstrated a possible method for temporarily opening up the blood brain barrier, allowing for delivery of drugs into the CNS (click here).

Furthermore, the development of immune cell producing tissues within the central nervous system means that addressing many of the suspected MS triggers (viruses, toxins, possibly CCSVI) would have little or no effect on the disease once this rogue immune system is in place. Indeed, we do have anecdotal reports that CCSVI treatment appears to be less effective in patients suffering from the progressive forms of multiple sclerosis, and none of the approved RRMS drug therapies has been shown to be of any benefit for progressive patients.

It took me quite some time to grasp the implications of this "rogue immune system" theory, but I've developed the following analogy that I think illustrates the problem fairly well. Imagine a lit match being held to a sheet of paper. The lit match represents whatever it is that triggers MS and the early RRMS stage of the disease, and the sheet of paper represents progressive MS. Once the match touches the paper and ignites it, extinguishing that match will have no effect whatsoever on the burning sheet of paper. Likewise, once a compartmentalized immune system develops within the CNS (the burning sheet of paper), extinguishing the conditions which allowed for it to develop (the lit match) will be ineffective in curtailing the disease. Indeed, this is exactly what we do see with current accepted MS treatment modalities, and, anecdotally at least, in the treatment of CCSVI.

Therefore, the possibility exists that there is a window of opportunity before these lymphatic tissues develop and the disease goes progressive during which the treatment of MS has its best chance of curtailing the advance of the disease.

Clearly, research priorities must be shifted to definitively identifying the underlying causes that initiate the aberrant immune response seen in MS, rather than simply finding new and more profitable ways of suppressing the immune system, many of which are of questionable effectiveness in stopping RRMS from transitioning to progressive disease (click here). Plainly, there are processes driving the disease even in its earliest stages that are not directly related to the systemic immune system. We must also learn if progressive disease is in fact driven in large part by a self perpetuating immune reaction developing within the CNS, and if so identify which progressive patients are suffering from this development, and of course also find safe and effective methods to fight it.

Science is finally beginning to tease apart the intricate puzzle of multiple sclerosis, but vigorous and innovative research is urgently required, as is a shift away from much of the current thinking about the disease, which has proven hugely profitable to Big Pharma, but of little value when it comes to eradicating MS. Real hope is on the horizon, but new maps must be drawn to finally deliver MS patients to the promised land.

Some New Photos, With a Twist

I've added some new photos to the Wheelchair Kamikaze photo gallery, but these are a little bit different than any of the other shots found there. Back before my neurologic difficulties robbed me of the ability to hold a camera to my eye (click here to see my wheelchair mounted camera set up), I loved taking photos with antique and toy cameras. Because of the decidedly low-tech quality of the optics used in many of these cameras, the images they produced had a surreal quality to them, almost like snapshots taken from a long-ago dream. I used to scour eBay listings, flea markets, and yard sales for cheap relics that were still in working order, knowing that each one would have its own unique but endearing quirks. Of course, none of these cameras were digital, and all used traditional film, which further makes them impossible for me to now use, as loading film with my one wonky but still working hand would be quite the achievement.

Within two years of my diagnosis I was no longer able to hold a camera to my eye and had to sadly give up my yen for photography. I bitterly thought my photo days were over, until my disease progressed to the point where I needed a wheelchair. Once I got the electric beast, and embraced the freedom it allowed me, my wife insisted that I try to figure out a way to rig a camera to the chair, and pressed the point home by getting me a suitable camera and camera mounting equipment one Christmas. I was quite resistant to the idea at first, I think because I was afraid the results would not be up to snuff, and would only serve as evidence of just how much I'd lost to my illness. After a couple of goes at it, though, I found that the photos I took in my new, somewhat unwieldy manner actually weren't all that bad, and realized that once again I was back in business. Of course, the antique and toy camera fetish was out, as the only cameras suitable for my new set up were high-tech digital beasties, but, as they say, any port in a storm.

Lo and behold, a couple of months ago I discovered that there were some decidedly low-tech lenses available to be mounted on my high-tech digicam. I warily ordered one, called simply the "toy camera lens" (click here), from an outfit in Hong Kong, half expecting my money to disappear into the ether. Incredibly, three days later (!) a package arrived from Asia, containing my wonderfully cheapo new lens. It's a really strange creature, with an area of sharp focus in the center, surrounded by increasingly swirly and out of focus edges. It's kind of temperamental, and I'm still sussing out the best ways to utilize its eccentric charms. There's no autofocusing the thing, you actually have to focus it by hand, an old-school exercise that I somehow find very satisfying, even though it increases immensely the complexities of trying to take a photo with only one coopertive hand.

So, presented for your perusal are the following photos, all taken with my new toy camera lens. I'd really appreciate some feedback on these, as I'm pretty sure they won't appeal to everyone, but I think some will find their dreaminess appealing, and hopefully see something striking or compelling in them. If not, you have permission to tell me I'm nuts. Honestly, I'd love to hear all opinions, good or bad, so feel free to leave comments positive or negative, as all will be valued.

Bits and Pieces: End of Summer Edition

Image by Claudio.Ar via Flickr

Well, here's another collection of various items of interest (well, at least of my interest), most of which have something to do with MS, and none of which have anything to do with the end of summer. Just thought I'd note that the seasons have changed once again, and we are now officially in autumn, my favorite time of year.

Time just whizzes by, doesn't it? I've noticed that the older you get, the faster time seems to pass, so much so that it becomes increasingly difficult to get your arms around the quickly passing days, and events unfold at breakneck speed. Remember when the two-month summer vacation from grade school seemed like an eternity, filled with innumerable dramas and intricate subplots? Now two months seem to pass in the time it takes me to let out a good yawn.

Just goes to show how subjective is our existence. I suppose this ever increasing sense that time is speeding up has something to do with the fact that as we get older, each increment of time becomes a lesser part of our lives. For example, a two-day-old infant experiences a single day as 1/2 their lives, whereas, at 48 years old, a single day represents 1/17520 of my existence. All the more reason to try to make the most of your remaining time on earth, and here I've gone and completely wasted about a minute of your precious, ever dwindling allotment of life. Please forgive me.

With that, my latest collection of flotsam and jetsam…

♦ Researchers have discovered that the brains of MS patients show a marked deficiency in substances known as Neuro-Steroids (click here). Neuro-Steroids help build brain cells and maintain their function, thus increasing their levels in patients deficient in them might not only stop MS in its tracks, but also actually repair some of the damage that the disease does to the central nervous system. Better still, drugs designed to increase the level of Neuro-Steroids are already being trialed for use in combating epilepsy and depression, meaning that, if successful, Neuro-Steroid drugs could be on the market much quicker than a newly discovered compound that has yet to hit the trial pipeline. Of course, this research is still in its early stages, but it does seem quite promising.

♦ In other drug-related news, researchers have figured out a way to deliver drugs across the blood brain barrier, an obstacle that has inhibited the treatment of many central nervous system diseases throughout the history of medicine (click here). The blood brain barrier functions to keep the brain and spinal cord out of harm’s way by carefully selecting just what substances can cross from the bloodstream into the CNS, much like the doorman at an exclusive nightclub picks and chooses amongst the riffraff clamoring to get in, only allowing entry to the anointed few deemed worthy of such a privilege, a practice that made me want to vomit even back in the glory days when I was "fortunate" enough to be one of those deemed worthy. Anyway, researchers have now figured out a way to open a temporary window in the blood brain barrier, potentially paving the way for a new level of efficiency in treatments designed specifically for central nervous system disorders.

♦ Researchers in Japan have discovered a high-tech method of analyzing cerebral spinal fluid (CSF), allowing for the differentiation between MS and other neurologic diseases (click here). This could be hugely important, as currently there is no test specific for MS, making it a diagnosis by exclusion. In other words, doctors diagnose MS primarily by eliminating other possible causes of a patient's symptoms and diagnostic test results, a process which results in a fairly wide margin of error and a misdiagnosis rate of about 5%-10% . That's right, for every 10 people reading these words, there's a good chance that one of you has been misdiagnosed. So put that in your pipe and smoke it.

♦ A bit of bad news, as simvastatin (otherwise known as Zocor) has been found to be ineffective as a treatment for MS (click here). Four or five years ago there was much buzz about the statin drugs (commonly used to treat high cholesterol) possibly being of use in the treatment of MS, potentially as an add-on to be used in addition to other therapies, but recent research results have been disappointing.

♦ In CCSVI related news, the Buffalo Neuroimaging Analysis Center (BNAC) published a comprehensive overview of all of the CCSVI research that has been done to date. The BNAC Patient Advisory Council, of which I am part, put together an easy-to-read digest distilled from the much longer piece, written specifically with patient education in mind (click here). It's done in a question-and-answer format, and should provide a nice overview of the current state of CCSVI knowledge.

♦ The Canadian province of Saskatchewan this week announced that it will be sending MS patients to Albany, New York to participate in a CCSVI treatment clinical trial (click here). Although CCSVI research is not moving along as fast as many of us wish it would, in actuality the pace of research is quickening and gaining momentum, and hopefully we will soon start to reap the benefits of that research.There is still far more about CCSVI that we don't know than we do, and getting those questions answered, dither pro or con, in the quickest possible fashion is in the best interests of all, regardless of their stance on the hypothesis.

♦ For those interested in a comprehensive and extremely well researched and well-written account of the history of the CCSVI hypothesis and the science behind it, a terrific resource is the book "CCSVI As the Cause of Multiple Sclerosis" (click here), written by Marie Rhodes, a nurse and MS patient who was at the forefront of the CCSVI movement when it was in its early infancy. The book offers a wealth of knowledge, and is even available in a Kindle version.

♦ The Multiple Sclerosis Association of America (MSAA), a terrific organization that does much to aid MS patients, is offering a couple of interesting programs that caught my eye. The first is a webinar series designed to instruct patients on taking care of their financial well-being (click here), an incredibly important topic given the fact that so many of us are either already on disability or are contemplating a potentially financially treacherous future out of the workplace. The first webinar, "Being Money Smart", is scheduled for October 6, so sign up now!

The second program is the MSAA's Annual Art Showcase, which is now accepting submissions (click here). This year's theme is "Change", and artists are encouraged to interpret this theme as creatively and broadly as they wish. The showcase is limited to two dimensional art, and doesn't include photography (boo!).

♦ For those interested in the alternative treatment Low Dose Naltrexone (LDN), Julie Stachowiak, who writes About.com's invaluable weekly column on MS, has been keeping a diary of her recent foray into the world of LDN (click here). Naltrexone is an old drug that is used to treat various addictions, but in very low doses it has been purported to alleviate the symptoms of MS and a variety of other diseases. Anecdotal accounts seem very encouraging, with many patients reporting significant improvements while taking LDN. I tried LDN early on in my MS adventures, but found it didn't do anything for me. Of course, I'm not the best example to go by, since my diagnosis is quite uncertain (click here).

Unfortunately, because Naltrexone is an off patent drug it's cheap and there's not much money to be made from it, so very few if any scientifically valid clinical trials have been done to test its efficacy on MS patients. Just another of the many travesties visited upon chronically ill patients worldwide by a medical research system driven more by the quest for profit than by the desire to alleviate the misery of millions. Harrumph.

♦ Researchers in Scotland have found that marriage between cousins is not to blame for the high rate of MS found in that region (click here). Scotland has one of the highest rates of MS in the world, approximately 1 in 500, and the islands in which the study was conducted, Orkney and Shetland, have rates higher still. Far be it for me to cast judgment, so all I'll say to those contemplating marrying a close relative is that you can put any fears about your future children being predisposed to developing MS to rest. As for fears about extra limbs, or eyeballs in the middle of their foreheads, well, that's another story…

♦ In a sad bit of news, a lion suffering from Multiple Sclerosis like symptoms in Brazil died this past July (click here). Apparently, the plight of Ariel the lion touched the hearts of many, and his story was chronicled on his own website and Facebook page. Since I believe in a just universe, I'd like to think that Ariel is now in lion heaven, where he is using his fully functional claws, paws, and powerful legs to viciously maul and tear to pieces all of the naughty wildebeests and zebras who were sent to wildebeest and zebra hell. For everything, there is a season…

As Porky the Pig might say, th-th-th-that's all folks…

It Takes One to Know One

Image via Wikipedia

Receiving a diagnosis of multiple sclerosis, or any other dire illness, instantly transports a person to a very lonely place. They are suddenly no longer one of the "healthy", but are now marked by disease. A psychological shift occurs as the freshly minted patient grapples with their new reality. Although they might have been feeling unwell for some time, most folks are quite good at denial, so much so that many simply ignore their early symptoms, rationalizing them as inconsequential quirks, and proceed to get on with life, whistling past the graveyard as they go.

Back in the summer of 1995, I remember suddenly feeling the unmistakable sensation of liquid running down my left thigh, and I wondered for a moment if I was somehow inadvertently peeing in my pants. Reaching down, I felt that my thigh was dry, so no, I had not abruptly become incontinent. After a day or so, this weird sensation subsided, but in its place was a distinct numbness on the front of my thigh, stretching all the way from my hip to my knee, a lack of feeling that persists to this day. Given the fact that I was a world-class hypochondriac, you'd think that this disturbing symptom would've sent me in a panicked sprint to the nearest doctor. But no, I chalked my numb thigh up to a little fender bender I'd been in a few months earlier, and simply attributed the lack of feeling in my leg to some kind of pinched nerve or something. End of story, or so I hoped.

Eventually, though, after years of mounting warning signs and an increasing awareness that something just wasn't right, I developed a limp in my right leg, a symptom that couldn't be ignored. After seeing a number of doctors and undergoing a series of tests, I was finally shown some MRI images that clearly depicted a large lesion at the base of my brain stem, and was told I had MS. Whammo, I was plucked from the world of the healthy and forced into a scary new place, without so much as a parting gift or a welcoming orientation. I was confused, frightened, and, despite being surrounded by loving family and friends, suddenly quite alone.

No matter how genuinely well-meaning and caring the people around me were, there was simply no way for them to really understand the maelstrom of emotions that was roiling inside of me. Outwardly, I remained relatively calm and in control. Oh, I had my moments of gushing anguish and despair, but for the most part I maintained a façade of normality. Inside, though, it was as if I'd been gutted, and I felt like I was drowning, gasping for air. All of the sympathy and words of encouragement being directed my way were of little comfort, and in some ways made me feel even more singled out. Worse yet was the awkwardness of folks who decided it was probably best to leave my situation unacknowledged, and to act as if nothing had changed. While this might sound great in theory, the key word there is "act" as if nothing had changed. Suffice it to say that most people are very bad actors.

I deeply appreciated the declarations of support and affection that I received in the wake of my diagnosis, but, as beneficent as they were, they did very little to dampen the effects of the emotional nuclear bomb going off inside of me. The plain fact was that in some very real ways I was now quite alone in a crowd, as I was going through an experience that the members of my crowd not only had no personal knowledge of, but actively dreaded. Human beings are pack animals, tribal by nature, and despite being surrounded by people who genuinely cared, I was now a tribe of one.

Thankfully, I soon enough found salvation in the form of Internet chat rooms and forums. The web has a lively community of MS related sites, and although I at first felt like an intruder, reading much more than participating (lurking, it's called in forum lingo), before long communicating with fellow patients on the Internet became an elixir, and one that was quite addicting. Finally, a conduit to people who simply got it, who felt many of the feelings and experienced many of the experiences I was now going through, from whom I could learn and with whom I could share information and commiserate, no explanations necessary.

As my disease has progressed, and I have become more disabled, the need to communicate with others in similar situations has become even more vital. Like members of a secret society, we share hidden knowledge, from the indignities suffered courtesy the often maddening world of modern medicine, to the daily struggles of just doing things that not so long ago were no struggle at all. I recently had a conversation over lunch with another wheelchair person, during which we marveled at the fact that at some point in the past we'd been able to wake up, get showered, dressed, and out of the house in 45 minutes. Nowadays each of those acts could easily take more than 45 minutes, not including the periods of rest needed between each one. How could a healthy person ever really understand what it's like to try to make your way through world in which everyday objects have been turned into obstacles, from trouser buttons to socks to doors to utensils, all once mundane items now transformed into puzzles as complex as a Rubik's cube.

Fear is another factor that binds us, and what a tremendous relief it can be to talk to someone knows just what it's like to be left staring at the dark at the end of the tunnel, who has lived through those desperate moments when the worst-case scenario doesn't seem so far-fetched, when all of your best efforts at living in the moment and maintaining a stoic detachment temporarily evaporate and the ugly reality of the disease and its destructive capabilities breathes its rancid breath down your neck, whispering vile threats in your ear, threats which are far from empty. We're only human, after all, and despite our strongest efforts, such thoughts are never really all that far from the surface. When the conversation does turn to such matters, although very often laced with a heavy dose of gallows humor, the topic is usually discussed with frankness absent all denial, and speaking of what is sometimes considered unspeakable renders the sentiments expressed far less ominous than leaving them to fester in the dark recesses of the mind.

Yes, it takes one to know one, and despite the heartfelt gratitude I feel for all my healthy loved ones, friends and family alike, who have helped me get through this ordeal, the ability to connect with others who share an unwanted membership in our hideous little club has been absolutely vital. More often than not we laugh in spite of and at this insidious disease, defiant in the face of our shared adversity. We celebrate each other's victories, and mourn each other's losses, comrades in arms for the fight of our lives. Through the Internet and through this blog I've met many such folk, even if only by e-mail, and to all I say thank you, for understanding, for filling the void, for your courage and your kindness. My diagnosis may now be up in the air, but that doesn't change the inner or outer struggles I've experienced in dealing with my disease. As they say, a rose by any other name…

Now let's give this thing exactly what it deserves, a good swift kick in the ass, and if you can't kick then scratch its eyes out. Don't forget, living well is the best revenge, so live, my friends, live.

Say It Loud, I'm a Gimp and I'm Proud!

Image by Heinrich Klaffs via Flickr

Apologies to James Brown for the title of this post, as his 1968 funk classic "Say It Loud, I'm Black and I'm Proud" (click here to listen) helped galvanize the civil rights movement in America, offering a joyous rallying cry to people who for far too long had suffered at the hands of racism and oppression. The song was not only a shout of protest, but an admonition to embrace the very thing that conferred minority status on an entire people and turn what for some had at one time been a mark of shame into a badge of honor. On top of all that, the song irresistibly generates the urge to get up and shake your groove thing. That is, of course, if you are able to get up at all.

Those of us whose disease has progressed to the point where shaking our groove things is a distant memory and has left us visibly disabled - reliant on canes, walkers, or wheelchairs - also find ourselves members of a minority group, the disabled, the inclusion in which leaves some feeling invisible, helpless, and diminished. Much of the world simply isn't designed for people who don't have full use of their limbs, and the fully functional folks who populate it can be insensitive, uncaring, ignorant, and sometimes even intolerant. Though much progress has been made in in the fight for the rights of the disabled, the struggle is closer its beginning than its end.

Throughout much of history, victims of chronic illness, particularly of the kind that deform or disable, have often been looked upon with scorn, as if getting sick was somehow a mark of shame, the afflicted somehow responsible for their own affliction. In some cultures it was considered bad luck to merely let your gaze fall upon such a person, and even in those societies with a somewhat more sophisticated purview, it was often thought best to sequester these people away, if only to keep the more fortunate from feeling uncomfortable and ill at ease. Even within the last hundred years, the Nazis saw fit to exterminate those with chronic or genetic illnesses, to keep their precious Aryan gene pool from being polluted by such wretchedness.

It's no wonder, then, that the sick can sometimes feel some vague sense of shame, wondering what on earth they'd done to deserve such a fate. The human mind seems programmed to search for reasons, yearning for clearly defined cause and effect connections in a futile attempt to make some sense of the world and our place in it. The sheer randomness of getting hit with a miserable disease is in itself unsettling; in some ways illness might be easier to deal with if we could discern some reason for our demise, if we could appease ourselves with the knowledge that our current sorry state was brought about by some heinous act we'd committed in the past. No dice, though, the truth is that in the giant poker game of life we were simply dealt a crappy hand. Remember, though, that played the right way, with just the right amount of bluffing, sometimes even a handful of rags can be turned into a winner.

As I whiz around the city in my wheelchair, I often encounter fellow members of the electric chariot club, and always attempt to give them a friendly nod and a hearty hello. Many eagerly return the favor, but others seem to fold into themselves, clearly wishing they could become invisible, embarrassed that any attention be shined on them. My heart goes out to these folks, particularly because I completely understand where they're coming from, and then some. I was once quite the prideful jackass, mortified at the thought that the wonderful me could wind up in a wheelchair, and when the day finally came and the damn thing was delivered, I stared at it for several hours feeling quite nauseated before working up the gumption to actually get in and give it a try.

I've never felt more acutely self-conscious than those first few minutes wheelchairing out on the streets of the city, thankfully with my wife by my side. Soon enough, though, I realized that most of the people on the street were so self-absorbed that they didn't even notice me, as was evidenced by their propensity to walk right into me and my mechanical monster, as if anything below chest level was invisible. Before long I chafed at the idea that some freaking wheelchair was going to define me. Screw it, I would define it. I am not a chair, a cane, a walker, or an ankle brace, I'm Marc, and maybe now an even better version than the old Marc, having survived and learned from the endless gauntlet of physical and emotional affronts so thoughtfully provided by my disease and the modern medicine machine into whose belly I've forcibly been thrust.

Chronic disabling illness provides quite the double whammy; not only must the patient deal with the sobering psychological realities of being sick, but also with the physical handicaps wrought by their affliction. I'd imagine that even for the most stalwart among us, the burden can sometimes be just about too much to bear. Despite always attempting to publicly put my best foot forward (ha ha), each landmark on the road to disability has caused me emotional turmoil and plain old heartache. I've stumbled down a path familiar to far too many, marked by a succession of assistive devices, each one more obvious and discomfiting than the last. The anticipation that preceded my needing each of these devices was undeniably gut wrenching, so much so that in retrospect I realize that I put off reluctantly accepting their help for far too long. Frantically holding on by my fingernails to a self-image that had simply ceased to be, when I finally relented and allowed these mechanical aids into my life, they brought with them much needed relief and liberation, rather than the shame and revulsion that I had been so fearfully expecting.

Overcoming the mental and physical hurdles represented by accepting my increasing vulnerability has certainly given me a new sense of perspective, and maybe even a pinch of wisdom. The strange truth is that although my disease has left me exceptionally weaker physically, it's also made me immensely stronger psychologically. Like each and every one of my fellow patients, I've overcome obstacles before which I thought I would simply shatter, and by so far surviving the raging battlefield of illness I've gained self-knowledge and an inner fortitude that I never previously could have imagined myself capable. I've witnessed bravery and guts in other patients that have oftentimes had me verging on tears, daily displays of strength often nonchalantly expressed with nothing more than a smile and a shrug. I tip my hat to all of you, and invite everyone to join me in raising a big middle finger to any thoughts of shame or self-doubt brought about by the random bad luck of being socked by a serious illness, to any notion that we as people have somehow been diminished by our disease, and to the goddamned disease itself. Having and living with MS sucks, but the challenges it presents give ample opportunity to display grace, courage, and powerful determination.

Say it loud, I'm a gimp and I'm proud!

A Bit, a Piece, and Some Photos…

Image via Wikipedia

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

Image via Wikipedia

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)