A Few Bits, a Couple of Pieces, and a Happy Thanksgiving to All…

With Thanksgiving week upon us, I'm going to keep this one relatively short. Stay tuned, though, as next week I plan on posting a review of the latest in MS research, as there's been lots of important info released over the past six weeks or so. I'll cover the latest news on CCSVI, disease modifying drugs, and other MS research findings, along with the usual few dollops of opinion tossed in.

Please, don't let the inevitable tremendous anticipation of next week's post distract you from enjoying the holiday festivities. As difficult as it may be, try to stay focused on the turkey.

For those readers outside of the United States, who don't celebrate Thanksgiving this week, you'll just have to find something else to occupy your time. My European friends can busy themselves with happy thoughts about figuring out how to survive the impending collapse of the continent's economic system. Actually, we all can probably occupy our minds with such thoughts, as things aren't so hot in the US or Asia either.

WK readers in Canada, whose relatively sane economic policies have spared that country much of the turmoil roiling the rest of the world, will have to find some other distraction. Since Canadian Thanksgiving was last month, perhaps thoughts of hockey will have to suffice, or finding new and entertaining uses for maple syrup. It'll be hard to beat Sortilege (click here), though, which for the uninitiated is some pretty strong hooch made with maple syrup. BTW, kudos on the Canadian national anthem. As far as national anthems go, "Oh Canada" kicks major booty…

Okay, I said I was going to keep this short, and it's already getting long, so on with the show…

♦ A neuroimmunology researcher from the Scripps Institute sent me a note alerting me to an online petition she has started (click here), urging the US government to devote more funds to basic biomedical research at the National Institutes of Health.
 
I agree with her sentiments wholeheartedly, as the NIH is a precious resource that can't be left to wither on the vine, and is one of the last bastions of unbiased large-scale medical research left in the USA. The vast majority of our medical research is funded by for-profit pharmaceutical and medical device companies, who naturally devote their hard-earned bucks to research that stands a chance of turning them a huge profit. Don't get me wrong, I'm a big fan of capitalism, but money and medicine often make for terrible bedfellows. Even in this time of looming budget deficits, squeezing the NIH of funds will do nothing to solve our economic problems. Consider the following numbers:

For 2011 budget, U.S. spending on:
Social security was $2564 per citizen (20.8% of the budget)
Defense was $2203 per citizen (18% of the budget)
Medicare was $1569 per citizen (12.8% of the budget)
Medicaid was $1172 per citizen (7.8% of the budget)
NIH was $99 per citizen (0.8% of the budget)

Certainly, the funding of medical research is one of the last places we should be looking for savings. Finding newer and more effective treatments and even cures for dread diseases would pay huge dividends in the long run, both in human capital and reduced health care costs. I would think this issue is something that rational citizens across the political spectrum should be able to agree on. So please sign the petition…

♦ I recently came across an interesting new medical information website, called Medify.com (click here). The site offers links to lots of research abstracts and papers, along with patient to patient communities. A wonderful source of medical info, some of it otherwise hard-to-find, well worth checking out.

♦ Saving the best bit of medical info for last, here's some extremely exciting news: one of the nation's first multiple sclerosis stem cell therapy trials has been given the green light (click here), and should be soon underway. The Multiple Sclerosis Resource Center of New York (MSRCNY), in conjunction with the International Cellular Medicine Society (ICMS), will be conducting a 20 subject trial on patients with a definitive diagnosis of progressive MS, using mesenchymal stem cell derived neural progenitor cells, harvested from the patients' bone marrow, in an attempt to regenerate damaged nervous system tissues.

The director of the MSRCNY, Dr. Saud Sadiq, is my personal neurologist, and I know firsthand that his research facility, staffed with world-class scientists from around the world, has been hard at work for many years doing groundbreaking research in preparation for this trial. Stem cell therapy offers tremendous hope for MS patients, as it holds the promise of actually repairing the damage done by MS and restoring function lost to the disease. Let's all hope this first trial is a resounding success, one from which we all may reap tremendous benefit in the years to come. The trial is set to run for three years.

♦ I leave you with the following piece of eye candy (it's not hard on the ears, either), which is simply breathtaking. It takes 30 seconds or so to really get going, but be patient, and you'll be amazed by a stunning natural phenomenon, created by nothing more exotic than a flock of starlings…



Murmuration from Sophie Windsor Clive on Vimeo.


 

Happy Thanksgiving! Gobble, gobble…

Related articles

• NIH Seeks Advice on Budget Crunch (news.sciencemag.org)

Mind the Gap

When riding on the London Underground (subway), passengers are warned to "mind the gap". This is a reminder to beware the space between the subway car and the platform, which can pose a hazard to unwary folks entering or exiting the train. Having never been to England, I know this only from the movies, but I would imagine that nothing has changed and passengers are still reminded to take care to avoid any accidents. You've got to love the polite but direct way the British deliver this warning. Mind The Gap. Here in New York City, a similar official admonition would probably be something like "Look Alive, Jackass".

Be that as it may, in the course of our lives we are all confronted with gaps, both physical and existential, and, as with so many things, dealing with a chronic illness only magnifies these breaches. Perhaps the most difficult gap people come to grapple with is the sometimes gaping chasm between what they want and what they receive. We all start out with minds filled with dreams of who and what we'll be, a little preview clip of our own lives playing repeatedly in our heads. Despite ambitions that differ from individual to individual, the scenes playing out in our imaginations generally include joyful images of success, romance, and immense satisfaction. Aside from a very fortunate few, though, more often than not, as the paths of our lives unfold these imaginings divert increasingly from reality, and our expectations adapt to fit the circumstances in which we find ourselves.

When I was a little boy I wanted to be either a paleontologist or a veterinarian. I loved dinosaurs and dogs, so the future seemed clear. When I got older, in adolescence and early adulthood, I fancied myself a writer or rock star, in either case living large and thoroughly enjoying it. For a while I did front a rock band, and in some dusty folder packed away in a box whose location is now forgotten lives the yellowing, long untouched beginnings of a novel, so old it was written on a typewriter. I did the starving artist thing for a while, but found I could only run away from responsibility for so long, and eventually had to (gulp) cave in and take a "real job", to my absolute horror and chagrin. Surprisingly, after the initial shock wore off, my ambitions adapted and fell in line with my new reality, and I found myself thirsting for advancement in my new field of employment (TV and video production). Still, though, I was regularly haunted by the remnants of my old dreams, and despite a career that turned out to be relatively successful, somewhere deep within my soul flickered embers of disappointment, a feeling that I had somehow sold myself short.

When healthy, though, it was easy enough to placate myself with thoughts of the future. Even though I hadn't achieved the summits for which I had originally set out, the future was still an open book, and I could sit at my desk and pleasantly daydream about a tomorrow that was quite different from today. During the course of my life, I had jobs I liked and jobs I hated, periods filled with romance and also times of intense loneliness, episodes of mile a minute excitement punctuated by stretches of stone cold boredom. Through all of these ups and downs was always the promise of the future, an intensely strong motivational force that perpetually fueled the desire to plow onward. The gap between what I wanted and what I received could be papered over and camouflaged by the anticipation of a future that might still hold some magical surprises.

Living with a progressively disabling illness completely changes the equation, though. Instead of a future holding visions of grand dreams fulfilled, now the thought of days to come holds quite a bit of trepidation, the clouds coming over the horizon looking threatening indeed. I've watched the right side of my body slowly become essentially useless, and now the left is proceeding down a similar path. Of course, there is always hope, in the form of stem cells, CCSVI, neuroprotective and neuroregenerative therapies, and any one of a number of alternative treatments, but I'll not kid myself. As a man who likes to gamble, I have a good understanding of odds relative to eventual outcomes, and if this was a horserace, the pony named "Wheelchair Kamikaze Gets Cured" would be a definite longshot. Still, longshots do occasionally come in, and when they do the payoff is large and sweet. I've always been a guy to back the underdog, and I've cashed in on my share of longshots, so I am by no means counting myself out, but my situation has certainly put a damper on my proclivity to daydream about the future.

Of all the things that MS robs from those that it afflicts, perhaps it is this pilfering of a future filled with promise that has the potential to wound the most. Without it, the gulf between "wanted" and "received" can be viewed with crystal clarity. When healthy, it's easy enough to leave the mistakes of the past behind, because the activities of the present and anticipation of the future serve as kinetic distractions. Life proceeds like a twig caught in a flowing river, the headlong rush leaving little time to ruminate over the treacherous rapids or dangerous waterfalls that have already been navigated. Now, though, life has been cleaved in two along a fissure called illness, leaving me plenty of time to examine the intricacies of my existence before I got sick and pick apart the tangle of circumstances, some intended and some coincidental, that littered the path I followed.

Though there is much wisdom that can be gained from such retrospective examination, there's also plenty of room for regret. I certainly made my share of mistakes, some of them doozies, and now that my past existence has for all intents and purposes been separated from my current narrative, it's far too easy to get lost in a rush of "I should haves" and "I could haves". Some of these are relatively petty, like why the hell didn't I learn to scuba dive during the 10 years I lived in Florida, but others are more profound, "should haves" that had the potential to fundamentally impact my existence, lost opportunities that loom especially large now that the timeline of my life no longer runs in a continuous fashion, but rather as a whole broken into pieces. Might there have been a choice along the way that would have spared me my current predicament?

As a person dealing with a progressively disabling disease, losing the previously unappreciated luxury of burying the past in anticipation of the future leaves one to either flounder mournfully and angrily at the cruelty of the fates, or to consciously glean whatever positives can be plucked from the past and concentrate on making the most of the present. For all people, sick and healthy alike, the past has only as much influence on the present as it is allowed to have, although this can be a difficult concept to grasp and act upon. Those of us who have seen our lives divided by unfortunate circumstance, who have received a future none of us would have ever wanted, are forced to reconcile ourselves to this most unfortunate gap and consciously make the choice to maximize the present as an entity unto itself, divorced of the past and independent of whatever the future may hold.

Thus, we are impelled to mind the gap, and make the most of every day. The future may be frightening and the past of little consequence, leaving this day a standalone vessel which we can fill with purpose and contentment, paying little mind to desires left  unrealized, instead focusing on appreciating that which we have and not lamenting our losses. By consciously taking it day by day, hour by hour, minute by minute, and second by second, fulfillment can be found in spite of this infernal illness, the gap between wanted and received reduced to an inconsequential sliver.

So, mind the gap, lest the gap mind you…

(Not sure what that last line actually means, but it sure sounds good, kinda spooky, even…)

Greed Trumps Common Sense Once Again, Courtesy Big Pharma

Image by Images_of_Money via Flickr

The mix of money and medicine often makes for a strange brew. Far too often, conflicts arise between what is best for the patient and what is best for the bottom line. Over the last several decades, treating chronic illness has mushroomed into a worldwide multibillion dollar industry. To the megacorporations reaping these profits, patients are seen first as consumers, rather than sick individuals needing to be healed. This truth is often camouflaged with warm and fuzzy programs designed for patient outreach and education, but CEOs of publicly traded medical corporations, as mandated by law, are beholden to their shareholders, not to the patients consuming their company's products, a mission which is sometimes at odds with what should be the goal of all involved in the healing professions: the curing of illness and the alleviation of suffering.

We see this unfortunate circumstance play out time and time again in the world of multiple sclerosis. Since Big Pharma finances the vast majority of medical research done in the USA, promising therapies with little profit-making potential are left to wither on the vine. Thus, medical research increasingly involves only therapies that stand to attain blockbuster status. We therefore have very little scientifically reliable data on the effectiveness of Low Dose Naltrexone, dietary supplements, acupuncture, naturopathic remedies, and other largely benign practices and substances. Alternative theories about the disease, such as CCSVI, are met with a fusillade of negativity instead of intellectual curiosity, as might be expected in the case of a disease as intractable as multiple sclerosis.

One of the oddest examples of the profit motive trumping common sense involves the drug Rituxan (click here), a compound first formulated to battle B cell non-Hodgkin's lymphoma, for which it was approved by the FDA in 1997. Rituxan was the first monoclonal antibody used to fight cancer, and proved to be both safe and effective in that role. The compound works by destroying B cells, one of the major components of the human immune system. Therefore, in addition to its lymphoma fighting abilities, Rituxan is a powerful immunosuppressant. Due to these immunosuppressive properties, the drug was tried with varying degrees of success on a number of autoimmune diseases, and has been approved for use in patients suffering from rheumatoid arthritis.

Several years ago, clinical trials were started testing Rituxan's efficacy in fighting multiple sclerosis. These trials included not only RRMS patients, as is typical of MS trials, but also PPMS patients, a population for which there are no approved therapies. Phase 1 and 2 trials showed the drug to be extremely effective, dramatically reducing the amount of enhancing lesions seen on patient MRIs, and cutting by half the number of relapses experienced by RRMS trial subjects (click here). The trial results were at least equal to those seen with the drug Tysabri, which to date had been the most effective MS drug on the market. Rituxan had the added advantage of having a long history of use, which showed it to have a much lower incidence than Tysabri in expexposing patients on the therapy to to the possibility of developing PML , a sometimes fatal brain infection. Trials for PPMS were not as successful, although analysis of the data did seem to indicate that a subgroup of PPMS patients did appear to benefit from Rituxan therapy (click here).

So, it would seem that all systems were "go", and that Rituxan would be quickly shepherded into phase 3 multiple sclerosis trials, the final step needed before FDA approval to go to market, right? Well, this is where things go a little bonkers. It turns out that Rituxan's patent is due to expire in 2015, meaning that the company that makes it, Genentech, will no longer have exclusive rights to the drug, and generic versions of it could come on the market, esseessentially stripping Rituxan of its profit-making potential. Because of the complexity involved in making monoclonal antibodies, it was at first thought that the production of generics would be too costly to be seriously considered, but other companies, sensing opportunity, did indeed step into the arena (click here). Given this situation, despite the great promise shown in the earlier trials, Genentech pulled the plug on further MS Rituxan trials. Nevermind that Rituxan appeared to be safe and effective in alleviating some of the suffering caused by a dread disease, there was no money to be made from it, so any further development hit a brick wall.

Instead, Genentech did some tinkering with the production methods used to make the drug, and came up with a compound called Ocrelizumab (click here), another monoclonal antibody that destroys B cells, which was quickly put into clinical trials for rheumatoid arthritis, lupus, multiple sclerosis, and hematological cancers. By developing this new compound, so similar to Rituxan, Genentech was insured of maintaining exclusive rights to the drug for several decades, with no threat to the tremendous profits a drug equally as effective as Rituxan could generate. Ah, but the best laid plans of man sometimes go awry, and things didn't work out quite the way Genentech intended.

In 2010, Genentech was forced to suspend Ocrelizumab trials in rheumatoid arthritis and lupus due to deaths resulting from opportunistic infections attacking trial participants (click here). Of course, this was a tremendous blow to Genentech's wily plan to circumvent Rituxan's patent issues (click here), and a serious kick in the bottom line. But, alas, all was not lost, as trials continued testing Ocrelizumab's use in multiple sclerosis. Recently released phase 2 clinical trial results have shown Ocrelizumab to be highly effective in reducing enhancing lesions and relapses in RRMS patients (click here), and Genentech is now in the process of recruiting patients for phase 3 trials for both RRMS and PPMS (click here, here, and here). Apparently, the perception is that tolerance for risk is higher in the MS population than it is among lupus or RA patients, so it's full speed ahead, torpedoes be damned.

Rituxan is currently still on the market, often used off label for the treatment of MS, and has proven to be very effective in relieving some of the suffering of RRMS patients. Unfortunately, since it is not FDA approved for use in MS, many insurance companies refuse to pay for it, as it is an extremely expensive therapy (over $40,000 per year). Once the generics do hit the market in several years, the price of the drug should plummet. Should Ocrelizumab pass its phase 3 trials for MS, and be approved by the FDA, rest assured that Genentech's marketing machine will use every trick in the book to get this newer, less proven, and possibly more dangerous drug given preferential treatment over its low-rent cousin.

Of course, neither of these drugs does one whit to cure MS, but why try to cure something when treating it is so immensely profitable? Rituxan has proven to be quite effective and relatively safe (the PML rate is in the range of 1 in 100,000) when used to treat MS, and the fact that it will never even be given the chance to get FDA approval as an MS therapy simply because its power to generate millions of dollars in profits will soon disappear is nothing short of a travesty, further compounded by the emergence of Ocrelizumab, whose sole reason for existence is to sop up the profits that will be lost when Rituxan goes off patent. Might not the money used to develop and test Ocrelizumab, a figure undoubtedly in the millions of dollars, have been better spent on research that might further our knowledge of how to combat MS, rather than simply finding a way to mimic the actions of an already existing drug in a form conveniently different enough to be patentable (and, apparently, more dangerous)?

Unlike some other MS advocates, who label all of the available mainstream disease modifying drugs nothing more than snake oil, I recognize their value in improving the quality of life of many of the patients taking them. Certainly, even if they do nothing to halt the progression of the disease, dramatically reducing the amount of relapses suffered by RRMS patients has great value, and I know of many patients whose lives have been tremendously improved through the use of today's DMDs. What I can't stomach, though, is the blatant profiteering practiced by the big pharmaceutical companies, as is so clearly illustrated in the Rituxan/Ocrelizumab saga. People's lives are at stake, but I suppose in the world of big money modern medicine that concern pales in comparison with the chase for the almighty dollar.

I say shame on all involved…

Share |

Related articles

• New drug shows promise against multiple sclerosis (eurekalert.org)
• New Multiple Sclerosis Therapy Promising In Early Trial (nlm.nih.gov)
• Ph2 Roche study delivers promising long-term ocrelizumab data on MS (fiercebiotech.com)

Another Day in Paradise

Image via Wikipedia

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.

Share |

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"…

Share |

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

Image via Wikipedia

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!