Thursday, September 11, 2014

Supplements, My Supplements

Arabic herbal medicine guidebook

Arabic herbal medicine guidebook (Photo credit: Wikipedia)

Using natural supplements to help treat MS is always a topic of much interest amongst patients. In the face of the sometimes daunting side effect profiles of the pharmaceutical drugs approved to combat the disease, the use of herbs and other natural substances, widely perceived as being more benign than the immunosuppressant/immunomodulating pharmaceutical products, holds great appeal for many dealing with Multiple Sclerosis. MS research headlines regularly trumpet one natural remedy or another as having been discovered to slay or at least tame the MS beast, and stories of miracle cures abound, percolating their way around the Internet. It can be awfully hard to separate the wheat from the chafe, so to speak, making the whole topic of herbal remedies a great big ball of confusion.

I’m very fortunate that the MS clinic at which I’m a patient, The International Multiple Sclerosis Management Practice here in New York City (click here), has on staff a naturopathic doctor specializing in the treatment of neurologic illness. Dr. Deneb Bates is one of the sharpest physicians of any specialty that I’ve had the pleasure of working with during my experience as an MS patient, and with her guidance I take a variety of herbal remedies and concoctions designed to alleviate my symptoms as much is possible. I can’t say that the witch’s brew of natural substances that have become part of my daily routine has put the brakes on my disease progression, since my illness seems intent on defying any efforts to rein it in, but I hope they may have at least slowed my progression a bit, and I’m certain they’ve at the very least helped to dampen some of the symptoms of my condition.

Before I spill the beans (ha ha, just a little natural supplement humor) on the rather long list of supplements I take, let me first state that mine is a very atypical case of MS, if it is even MS at all. I’ve been poked and prodded by some of the world’s best MS specialists, and none has been able to come up with an absolutely definitive diagnosis for whatever it is that ails me. Clinically my disease presents like Primary Progressive Multiple Sclerosis (PPMS), but many of my test results leave physicians scratching their heads. In fact, after some disagreement, my neurologist and I have settled on calling my disease PPMS with the caveat that in my case those initials stand for the “Peculiar Paralysis of Marc Stecker”.

Additionally, I have several complicating factors that make me an especially difficult patient to treat. I have a wide array of endocrine problems, stemming from autoimmune thyroid disease and an increasingly faulty pituitary gland (also possibly due to autoimmune problems). My many hormone imbalances can result in symptoms that mimic those of neurologic illness, such as fatigue and muscle weakness, making it sometimes hard to figure out just what physical defect is causing which misery.

I also suffer from Avascular Necrosis (also called AVN), which is a very rare side effect of intravenous steroid use. AVN causes the bones in the major joints to perish, at which point they quite literally crumble and, as you might imagine, cause immense pain. I have AVN in both hips and both shoulders, which means that I’ve been living the last five or six years with the equivalent of two broken hips and two broken shoulders. To call the condition painful would be a gross understatement. If my overall health were better I’d have had both hips replaced years ago, but due to the ravages of MS and all of my hormonal deficiencies undergoing such major surgery would be extremely risky. Instead, I live each day gritting my teeth through pain that varies from uncomfortable to excruciating to, well, there really are no words for it, though at times long and creative strings of obscenities attempt to fit the bill. In order to try to keep my AVN pain down to a roar, I’m on very strong anti-inflammatory medications as well as the occasional opioid painkiller, all of which can cause problems of their own, such as liver and kidney toxicity.

Lastly, careful screening of my cerebral spinal fluid by my MS clinic’s on site laboratory has shown that I have extremely high levels of oxidative stress and extremely low levels of natural antioxidants in my central nervous system, the combination of which may be contributing to my ongoing neurodegeneration. Oxidative stress occurs as the result of the body burning nutrients to create energy, the process of which releases nasty little molecules called free radicals that can smash through cell walls and damage vital tissues and organs (click here). Think of these free radicals as the body’s equivalent of the noxious exhaust fumes put out by an automobile engine when it burns gasoline. The human body is normally equipped with natural antioxidants that soak up many of these free radicals, but even in the healthiest people some antioxidant supplementation isn’t a bad idea. In my case, with my natural levels bizarrely low, it’s just about requisite that I try to boost these levels with antioxidant rich supplements.

As you’ll see, many of the natural supplements on my list are anti-inflammatories and/or antioxidants, which can be helpful to all MS patients (a major component of the MS disease profile is inflammation, after all) but are especially so in my case due to my problems with AVN and low levels of natural antioxidants. Some of the other items on my list are targeted at helping kidney and liver function, which can be compromised by many of the medications MS patients take to help control their symptoms. None of these supplements should be taken without first consulting your doctor. Don’t be fooled into thinking that anything thought of as “natural” is without the potential to do some harm. Indeed, some of these supplements are strong medicines, and can adversely interact with pharmaceutical meds, making it vitally important that their use not be embarked on as a do-it-yourself adventure.

Okay, with that rather long prelude out of the way (is it no wonder I shy away from twitter? I don’t think I could say hello in 140 characters) here is the list of natural supplements I take each and every day, in no particular order. I’m intentionally not including the dosages to discourage folks from simply taking these things willy-nilly, without first consulting a physician. Please don’t hate me…

Vitamin B Complex - Vitamin B comes in many forms, most of which play an important role in the function of the central nervous system and metabolic processes (click here). In fact, people with severe vitamin B deficiencies are sometimes misdiagnosed as having Multiple Sclerosis. Since the most obvious symptom of my disease is a slow and steady decline of neurologic function, making sure my body is well stocked with Vitamin B just makes sense.

Green Tea Extract - as the name implies, this stuff is derived from green tea, which is tea in its unfermented form (unlike black tea). Green tea is among other things an extremely effective antioxidant, and has been shown to be helpful with cognitive functioning (click here). You could likely get the same benefit from drinking 5 or 6 cups of green tea a day, but given my bladder frequency/urgency issues, if I were to go that route I’d have to spend the better part of my day in the bathroom, and might, in fact, never stop peeing. So, I choose to take the stuff in pill form instead.

Curcumin - curcumin is the active ingredient in tumeric, the spice which is the basis of curry powder. Curcumin is both a very strong anti-inflammatory and antioxidant (click here), and is purported to have a very long list of health benefits. Interestingly, countries with a curry rich diet often have very low rates of autoimmune diseases, but of course other factors may come into play.

Milk Thistle - milk thistle is a flowering plant related to the daisy family, and is very effective in helping to maintain proper liver functioning (click here). Since I take many medications that are metabolized in the liver, my liver function has always been of great concern to my physicians, and milk thistle has been effective in keeping my liver enzymes within the normal range ever since I started taking it. Before I started taking milk thistle, blood tests would often reveal my liver enzymes creeping above acceptable levels. So, milk thistle, good stuff.

Pellitory of the Wall (Parietaria) - what milk thistle does for the liver, this stuff does for the kidneys. Because of the problems in my hips and shoulders, I take a very powerful, prescription only nonsteroidal anti-inflammatory (NSAID) which helps keep the pain in my joints to manageable levels. Unfortunately, this drug can wreak havoc on the kidneys, and my pain management Dr. is always hyper concerned about checking my kidney function via blood tests. Before I started taking Pellitory of the Wall my kidney function tests would often veer into dangerous territory, but after consulting with my naturopath and starting on Parietaria my kidney function numbers have all fallen comfortably within normal ranges. My pain management doctor. was so shocked by this reversal in kidney function levels that he insisted on calling my naturopath to find out more about the stuff. Pellitory of the Wall has also been used traditionally to treat urinary tract infections, rheumatic elements, and some circulatory system problems (click here). Again, good stuff.

Licorice Solid Extract - one of my endocrine problems is low levels of cortisol, one of the body’s natural steroids which is manufactured by the adrenal glands. Licorice is very effective in helping to maintain adrenal function (click here), and taking it has in fact increased the level of cortisol circulating in my blood. Licorice solid extract is a concentrated form of natural licorice and is very effective in helping to deal with fatigue, which is a well-known and very problematic MS symptom. This stuff isn’t to be fooled around with, though, as it can raise blood pressure and heart rate, in some people to dangerous levels. Be aware that most licorice candy has little if any real licorice in it at all, so eating lots of Twizzlers won’t have the same effect.

Eleuthero Solid Extract - although Eleuthero is sometimes referred to as Siberian Ginseng, this root is only a very distant cousin to the more common Asian and American ginsengs. In naturopathic terms, Eleuthero is considered an adaptogen (click here), a substance used to keep the body in balance. Eleuthero is purported to help with stress-related conditions, colds and respiratory infections, immunologic functions, and fatigue, among other uses (click here). I’m taking it because I have a long history of chronic sinus infections, as well as to try to counteract my usual host of endocrine problems. I’ve found that Eleuthero does seem to help with my MS and/or endocrine related fatigue.

N Acetyl Cysteine (NAC) - NAC is an amino acid that is a powerful antioxidant (click here). The substance is a precursor to glutathione, which is the body’s own natural and most powerful antioxidant, used to combat all of those nasty free radicals that result from the body metabolizing food into energy. As I mentioned previously, tests of my cerebral spinal fluid have shown me to be severely deficient in natural antioxidants, so, in theory, I stand to benefit from as much antioxidant support as I can get. NAC is also known to have antibiotic and perhaps antiviral properties.

L-lysine - L-lysine is an “essential” amino acid that cannot be manufactured by the body. It’s considered very effective in helping with the symptoms of osteoarthritis and is supposed to have prominent antiviral properties (click here). Many researchers believe that a virus or viruses play some role in the MS disease process. L-Lysine also plays an important role in the production of hormones, antibodies, and enzymes. The stuff additionally aids in the production of collagen, which is essential for the health of bones and skin, and it shows up in many skincare products.

Boswellia Extract - Boswellia is also known as frankincense, which, according to the Bible was one of the gifts the three wise men brought to the baby Jesus. Hey, if it’s good enough for the baby Jesus, it’s good enough for me. I’m hoping that if I take enough of it I may someday be able to walk on water, which would really be a miracle since I currently can’t even walk on solid ground. Boswellia is a powerful anti-inflammatory agent, and it also has anti-oxidative properties (click here). Like some of the other natural supplements on this list, Boswellia has also been shown to have germ fighting properties. Inflammation, oxidative stress, germs, BAD. Boswellia, GOOD.

Vitamin D - by now, I’m sure most MS patients have heard of the importance of vitamin D in helping to potentially ward off the disease in those who don’t already have it and perhaps dampen its impact on those who do (click here). Depending on the level of vitamin D in a patient’s blood, it’s pretty much generally agreed that most patients should be taking some amount of Vitamin D supplementation. Careful, though, as taking too much vitamin D can be toxic, so you don’t want to overdo it.

MitoQ - this supplement is basically a supercharged version of CoQ10, a very powerful antioxidant. MitoQ is specifically targeted at mitochondria, organelles that are known as the “powerhouse of the cell” which play a vital role in metabolic processes. Recently, some studies have shown MitoQ to be remarkably effective in treating the mouse model of MS (click here). As with all MS research done on mice, the results of these studies should best be taken with a few grains of salt, since the mouse model of MS is an absolutely horrible stand-in for the human version of the disease. That said, MitoQ’s antioxidant properties alone make it a good option for someone like me who has been shown to be sorely lacking in natural antioxidant levels.

Magnesium Glycinate - repeated blood tests have shown me to have low levels of magnesium, a mineral which is important to the health of cells, nerves, muscles, bones, and the heart (click here). Additionally, magnesium has laxative properties, which make it a good candidate for those of us suffering from the all too common MS pooping problems. Or, more correctly, lack of pooping problems.

Krill Oil - krill oil is a form of fish oil, made from shrimp like creatures called, you guessed it, krill. Like fish oil, krill oil is rich in omega-3 fatty acids, which have been shown to lower cholesterol and are also suspected to help ease MS symptoms (click here). The major advantage that krill oil has over fish oil is that the stuff made from krill doesn’t lead to fishy tasting burps and an unpleasant aftertaste. One of my longtime mottos as always been “whenever possible, avoid fishy burps”, so krill oil helps keep me true to my credo.

Well, there you have it, 14 dietary supplements that are part of my daily routine. Please consult your physician before starting any of the above-mentioned supplements. Mother Nature can be a beautiful maiden, but one not without teeth.

Most MS patients probably don’t need to take nearly as many supplements as I do, but since I have problems compounding my problems, it’s my hope and belief that at least some of the supplements are contributing to making my life more livable. As I stated previously, in addition to my neurologic problems I also have all kinds of endocrine dysfunctions as well as crumbling bones in my hips and shoulders, so I can certainly use all the help I can get.

Yes, when it comes to MS, I hit the triple jackpot – my initials are MS, I have MS, and I am a mess. Thank you, universe…

Tuesday, August 26, 2014

The Problem with Progression, Revisited

English: Cropped version of :Image:Domino effe...

English: Cropped version of :Image:Domino effect.jpg (Photo credit: Wikipedia)

The good folks who administer the website MultipleSclerosis.net (click here) and I have reached an agreement to publish 20 essays from the Wheelchair Kamikaze archives on their site. MS.net is a wonderful resource for MS patients and those who love them, filled with the latest MS news as well as insightful articles and essays by folks dealing with the disease in all its forms. Lots of good stuff there, all of it high-quality. Best as I can figure, the fact that they decided to include some of my essays must be due to some sort of clerical error.

The initial WK essay published on MultipleSclerosis.net is a post that first appeared on this blog in July, 2009, entitled “The Problem with Progression” (click here). Back then I’d only been writing Wheelchair Kamikaze for about six months, and had been in a wheelchair for one full year. At the risk of stating the obvious, the essay deals with the progressive nature of Multiple Sclerosis disability. In it, I state that “the problem with progressive neurologic diseases is that they progress”, a sentiment which may seem self-evident but carries quite a wallop. When I was first diagnosed I listened in a befuddled haze as the doctor talked about the need to try to minimize something he kept referring to as disease progression. I’d no idea what he was talking about, but I sure would find out in the months and years to come.

Even in those early days it was clear I had progressive neurologic disease, with few if any viable treatment options available. Since then, new disease modifying therapies and even some alternative approaches have proven to have significant positive impact on many afflicted with the relapsing remitting form of MS, but though the attention of researchers is finally shifting to progressive disease there remains precious little in the way of effective therapies for us “progressives”.

The roughly 6 years between my initial diagnosis and my writing “The Problem with Progression” had seen the disease wreak havoc with my life. I’d gone from having a slight intermittent limp to requiring first an ankle brace, then a cane, and finally an electric wheelchair. I’d been busily employed in a high profile industry but was now 2 ½ years into my forced retirement, had seen my social life diminish from flame to flicker, had witnessed my body betray me in ways I’d never thought possible. Such a tremendous amount of upheaval in such a relatively short amount of time, my body caught tight in the grip of a seemingly insatiable beast, my mind buffeted by an emotional whirlwind, my intellect left to desperately try to sort it all out.

Given the alarming rapidity of my disease progression, I wrote about the difficulty of processing the losses already visited when the prospect of losses to come loomed ominously on the horizon. The flipside of looking back to mourn the wounds already inflicted is looking forward and anticipating the insults yet wrought, leaving little room in which to find some measure of solace.

The opening paragraph of “The Problem with Progression” talks about the realization that I’d very likely soon need to use my wheelchair inside my apartment, when at the time the mechanical monster had been used exclusively out-of-doors. Well, that little prediction did indeed soon come to pass, and now the notion of my walking from the bedroom to the living room seems about as likely as my being elected Pope (quite the long shot for a Jewish guy from Queens).

Later in the essay I talked about how annual events had become markers of my disease progression, times when I could look back one year and assess the damage done over the previous 12 months. I used the example of the Super Bowl, wondering if and when I’d no longer be able to watch it from the comfort of my living room couch, or even be able to manipulate the TV remote. It’s now been at least four Super Bowls since I’ve watched the NFL championship game – or anything else, for that matter – from that couch. Instead, all of my TV viewing these last few years has been done from the vantage point of my wheelchair, which is at once both a constant reminder of my imprisonment by the demented captor that is MS, and the key that keeps me from being completely swallowed up by the dungeon of disease.

The six years that preceded my writing “The Problem with Progression” witnessed MS completely reshape my existence in dramatic fashion. The five years since, though, have seen the changes become much more incremental, but in some ways perhaps even more insidious. The psychological hurdles presented by being forced by the disease to totally change almost every aspect of my day-to-day existence in the half-dozen years following my initial diagnosis were big-ticket items, readily identifiable monoliths with which to emotionally grapple.

Now, although the disease continues to progress largely unabated, the changes are more discrete, much less apparent to anyone but me and my closest observers – increasingly clumsy fine motor skills in my one still usable hand, a sometimes crushing fatigue, muscle spasms that pound away in the dead of night. Most of the blatantly obvious milestones have already been reached, but each passing year finds me still weaker and less able. Creative adaptations allow for a semblance of equilibrium in quality of life, but at some point, barring some much hoped for intervention, the mounting deficits will defy adaptation. The difference between the earlier, more obvious stages of my disease progression and that of these later years is kind of like being dragged under water. Once your head goes under the surface, all anybody looking from above sees is that you’ve submerged. The only one who can feel the increasing pressure and mounting darkness of being dragged deeper and deeper into the murky depths is you, the marvels of fresh air and sunlight drifting off as if they were only half remembered fragments of a long-ago dream.

It’s testament to the power of the human spirit that life beneath the waves still holds elements of wonder, sparks that continue to shine brightly once the effort is made to clear away the shade. Though the disease progresses so too does the desire to defy it, to stake a claim in a world turned upside down. I may not get out and about as much as I used to, even in the wheelchair, and the rigors and stresses of the disease – both physical and mental – may dictate submission to constraints I long to throw off, but I’m still here, dammit, occasionally licking my wounds but nowhere near willing to raise the white flag. Dragged under the sea of disability I seem to have managed to grow gills, and though I acknowledge and accept that there are depths below which there can be no survival I maintain hope that somehow, someway, I’ll break the grip of MS and once again bob to the surface. In the meantime I’ll simply do the best I can, even if this year’s best pales in comparison to that of only a few years ago. The problem with progression may indeed prove to be unsolvable, but it won’t be for lack of trying.

Monday, August 11, 2014

Man Bites Dog (or, MS Patient Beats Insurance Company after Stem Cell Transplant, to the Tune of $400,000)


(c) GoGraph / lhfgraphics
Oh, the many pleasures of Multiple Sclerosis. In addition to the physical and psychological toll taken by the disease, MSers also have to deal with a medical establishment that at times seems purposely set up to make being sick as hard as possible. Here in the USA, one of the most infuriating components of that medical establishment is quite often the private health insurance companies, upon whose whims many patients rely on to pay for such superfluous luxuries as vital medications, essential treatments, and indispensable mobility devices.

In my 11-year career as a patient with a progressive disabling disease I’ve been subject to an almost countless number of frightening medical procedures, the prospect of any one of which would have made the healthy me ruin my pants. Despite the horrid nature of some of these procedures – from needles in the spine to having tubes the size of fire hoses stuck into my veins to tests involving electric shocks of varying intensities – I’d have to say that the source of some of my most prolonged periods of agony have been long and drawn out battles with insurance company telephone tormentors who seem trained by the spirit of Marquis de Sade himself to extract as much psychic pain as possible while doing their god-awful best to avoid providing even the merest dribble of satisfaction.

Given my numerous nerve-racking experiences dealing with the insurademons, it was with great relish that I read the heroic man versus insurance company saga of Mr. Dave Bexfield, which was recounted in the August 3, 2014 edition of the New York Times (click here). I’ve been acquainted with Dave, at least in the virtual sense, for several years through our interactions on various Internet sites, forums, and email. We finally actually spoke to each other last week, as I was preparing this piece. Dave is the creator of the website ActiveMSers (click here), a vital resource for MS patients looking for inspiration and info on how to stay as physically active as possible. The site includes Dave’s blog, interactive forums, tips and tricks, and reviews of all kinds of gear designed to help people with MS stay in the game, so to speak.

Back in 2010 Dave underwent HSCT (hematopoietic stem cell transplant), a stem cell procedure that, in a nutshell, gives MS patients (or patients with a variety of other so-called autoimmune disorders) a new immune system by first destroying their old one through the use of powerful chemotherapy agents, and then resetting it via a stem cell transplant. For more info on the procedure, please refer to my last Wheelchair Kamikaze post, in which I wrote extensively about HSCT (click here). The treatment successfully put the brakes on Dave’s very aggressive relapsing remitting multiple sclerosis, but also left him $200,000 in the hole, a situation which precipitated an epic four-year Battle Royale with his insurance company.

In order to fully understand the majesty of Dave’s victory over his insurance company, I think a little background is in order. Back in 2005, Dave experienced his first MS symptoms, in the form of vision problems and strange sensory experiences. A few months later he suffered his first full-blown relapse, which resulted in the entire right side of his body going numb. After going through the usual diagnostic workup (MRIs, spinal fluid analysis, etc.) he received a verdict of MS. Over the next four years, despite being on the disease modifying therapies Copaxone, Rebif, and finally Tysabri, Dave’s disease slowly progressed, with intermittent relapses, until very suddenly a number of severe relapses put his MS progression into hyperdrive, leaving him at times barely able to take a step.

Just as he was reaching the point of desperation, Dave learned of an National Institutes of Health (NIH) sponsored HSCT study being conducted at the MD Anderson Cancer Center in Houston, Texas. He was accepted into the study, and was deemed the ideal candidate because of the very aggressive nature of his RRMS and his corresponding diagnostic test results. Unfortunately, after receiving this good news came some bad. Due to cuts in the federal budget, the National Institutes of Health, though still involved in the study, could no longer pay for the treatment. If Dave was to participate he would have to cover the entire $200,000 price tag himself. Yikes, to say the least. Dave lobbied his insurance company for financial assistance, but his pleas were rejected outright because of the experimental nature of HSCT treatment. Ultimately, Dave managed to cobble together the $200,000 by draining his savings and through the generosity of his immediate family.

Dave underwent HSCT in 2010, and though the treatment itself was no picnic, it did successfully slam the brakes on his multiple sclerosis, which had turned so aggressive that Dave believes the treatment saved his life. He’s had absolutely no relapses or further progression of his disease in the four years since undergoing HSCT. Of course, there’s no guarantee that his disease won’t mount a counteroffensive at some point in the future, a possibility which he acknowledges, but what MS patient wouldn’t gleefully accept at least a four year truce with their disease, during which the progression of their illness was stopped cold, free from drugs or any other form of treatment? You can read more about Dave’s HSCT experiences on his website (click here).

One might think that this would be the happy end of the story, albeit one with quite the hefty price tag. Just a few months after his stem cell treatment, though, Dave’s insurance company suddenly decided that it would indeed start paying for some forms of stem cell therapy for multiple sclerosis patients, though no such therapy had received any kind of official approval for this use. Dave contacted the company in an attempt to get reimbursed for his treatment expenditures, but was told that he was too late, and that the timing of his claim was simply “unfortunate”. Thus began a gargantuan four-year battle between Dave and his insurer, one which found Dave, with dogged (some might say maniacal) persistence, going to extreme measures to try to prove his case. Through the magic of Google he managed to uncover confidential files that directly contradicted much of what his insurance company was telling him – that they were merely following government mandated guidelines, and thus really had no choice in the matter – and Dave even went so far as to file a Freedom Of Information Act request to uncover yet more evidence of malfeasance on the part of his insurance company. You can read a more extensive, blow-by-blow account of the cage match between Dave and his insurance company on his website (click here).

During his four year struggle with the Insurazombies, Dave contacted a consumer advocate reporter at The New York Times, David Segel, who calls himself “The Haggler”. The Haggler lobbied the insurance company on Dave’s behalf, at first with no luck. Some months later, Dave then provided the Times reporter with some newly uncovered and extraordinarily damning evidence against the insurer, and The Haggler once again contacted the insurance company’s top executives, this time with proof that the company had lied not only to Dave but to the New York Times as well. As if by magic, a few days afterwards Dave found himself having lunch with both the President and the CEO of the $2 billion a year insurance company, during which they informed him that they had, by the good graces of the universe, suddenly experienced a change of heart; not only would they pay Dave the approximately $200,000 cost of the HSCT procedure (which, incidentally, is less than they would have spent on him by now for FDA approved MS medications if he were still taking them, which he certainly would have had he not undergone HSCT), but also the interest that the money would have accrued over the past four years, which came to just about another $200,000! Yes, the end result of Dave’s single-minded crusade to get his due was a check in the whopping amount of slightly over $400,000. Score one (or 400,000) for the good guy…

This David Bexfield versus Goliath story is an extreme example of the trials and tribulations many patients with chronic diseases face when trying to deal with their insurance companies. The problem boils down to a basic conflict of interest: though the insured are the insurance companies’ customers, they are also the determining factor in how much revenue these companies ultimately generate, even if they operate as nonprofit organizations. The less money an insurance company has to pay out to its customers, the better its bottom line. In a world where the profit motive trumps all else, this dynamic can set up some dicey situations for sick people trying to get the best health care possible, and even for those just trying to get the basic necessities required to live with their disease.

My own experience with health insurers has been almost schizophrenic. At times these companies have been incredibly cooperative, yet on many other occasions they seemingly took their tactics directly from the handbook of the Spanish Inquisition, making the prospect of dealing with their telephone representatives as appealing as an invitation to a potluck dinner at Hannibal Lector’s place. I can identify no rhyme or reason behind these vacillations in the behavior of insurance companies. In fact, many times they seem counterintuitive.

For example, this past fall, my insurer unhesitatingly approved my being treated with a rarely used and extraordinarily expensive drug, to the tune of $150,000 (the treatment turned out to be an absolute disaster, which you can read about by clicking here). Yet, only a few months before, this very same company had me alternately begging, screaming, whining, wailing, bellowing, whimpering, and very nearly bursting several very important blood vessels while trying to get approval for a new wheelchair, without which I would have had to change the name of this blog to Bed Kamikaze. The twisted and convoluted course of my six-month struggle to get a piece of gear that was an absolute necessity at times had me questioning my own sanity as well as the very notion of a just universe, and whether or not I might somehow have been drafted into the dyspeptic nightmares of a sadistic surrealist who had eaten one too many enchiladas right before bedtime.

My wheelchair saga played out over an innumerable number of phone calls, and it often seemed as if the Insurafiends were inventing new tactics and excuses even as I was talking to them. My wheelchair provider was “out of network”. Yes, but I had out of network coverage and was willing to pay the portion not covered by my insurer. Paperwork faxed to the insurance company mysteriously disappeared in the Bermuda triangle that apparently existed between my wheelchair vendor’s fax machine and theirs, and when by some miracle it was finally received on their end (with confirmation), it was inevitably lost “in the system” or found to be lacking some key bit of information or arcane equipment code, thus requiring the process to begin all over again.

Once the paperwork was in order, the Insuraschmucks suddenly decided that the specifications of the chair I had chosen were outside of acceptable parameters, and so couldn’t be covered. Mind you, it was the exact same model of chair I’d been using for the past five and half years, only with some added functionality made necessary by the increased level of disability I had accrued through the intervening years. I was told I could appeal the decision to some higher level of Insurabastards, which of course I did. After violating their own self-imposed deadlines for decision-making several times, the senior Insurapricks deemed that, yes indeed, my chosen chariot would be covered thanks to my physical decrepitude, as vouched for by my neurologist. And then came the folly of all follies; the Insurascum insisted that they couldn’t reveal how much money they’d reimburse until the chair was actually ordered, but how could I place an order for the chair until I knew whether I’d be on the hook for $1000 or $20,000? Arghhh…

In the years since my diagnosis, I’ve learned that all of the convoluted tactics employed by the health insurance companies to keep from paying legitimate claims can be boiled down to three words: delay, delay, delay. Their goal is quite simply to wage a war of attrition, frustrating the claimant with technobabble, feigned incompetence, and arbitrary rules and regulations until the sick person gives up due to frustration, physical and mental exhaustion, or the mistaken belief that they are somehow in the wrong. The insurance companies have nothing to lose by playing these games; the longer they hold onto your money the more interest they earn on it, and in fact many if not most claimants do eventually wave the white flag after months or years of interminable mindbending insurabullshit.

All of this corporate hornswaggle would be bad enough if it were employed only on the hale and hearty. However, the hale and hearty aren’t typically the ones filing claims with their health insurance companies. During the trench warfare in which I was forced to engage in order to get a new wheelchair, in times of desperation I would remind the Insurabeasts on the other end of the line that they were talking to somebody who was just about three quarters completely crippled. And that this cripple was only trying to get himself a new wheelchair, which due to my progressing crippledness had become an vital requirement. It wasn’t as if I was trying to get them to pay for a spa vacation in Shangri-La. No matter, rules are rules, even when they are invented, bent, and broken by the very people spouting them.

So, three cheers for Dave Bexfield, the man who managed to topple Goliath while also landing a solid right hook on the chin of his disease. Give thought, though, to those poor souls who through no fault of their own don’t have any health insurance, and are left to somehow fend for themselves in the world of the Multiple Sclerosis Industry and its hyper inflated prices. I’m sure those in countries outside of the US, who don’t have to deal with private insurers, have their own horror stories and headaches, both literally and figuratively. There just seems to be something sadly broken in a world where sick people have to actively fight not only to try to get better, but often just to maintain their sickly status quo. Good grief…

Tuesday, July 29, 2014

HSCT – Will This Form of Stem Cell Therapy Soon Become the Standard ofCare for Many MS Patients?

English: Cervical spine MRI with enhancement s...

English: Cervical spine MRI with enhancement showing multiple sclerosis (Photo credit: Wikipedia)
Hematopoietic Stem Cell Therapy, now there’s a mouthful. More commonly known by its initials, HSCT, this form of stem cell treatment, first tried on MS patients back in the mid-1990s, is beginning to demand widespread attention from doctors and patients alike. Why? Well, one recent study found that when applied to properly selected patients, nearly 80% showed no sign of multiple sclerosis disease activity five years after treatment (click here). No relapses, no new MS lesions, no disease progression – none. Eye-popping results to say the least, all the more so given the fact that these patients were treated on a one time only basis with no follow-up drugs or therapy required. Results like these have led even some mainstream MS neurologists to begin looking at HSCT as perhaps evolving into the standard of care for many patients in the not-too-distant future.

With growing momentum, stem cell therapies of all types are creating a huge buzz in the MS community. While one form of stem cell therapy – that intended to regenerate damaged nervous system tissue – is clearly still in its experimental infancy, another, hematopoietic stem cell therapy, which seeks to reboot the immune system, has been used on MS patients for almost 20 years. Early attempts at using HSCT to treat MS, though at times producing encouraging results, were fraught with danger, with as many as 10% of test subjects dying as a direct result of the procedure. Recent refinements in technique, better patient selection, and a growing knowledge base are now bringing HSCT closer to mainstream use as efficacy rates have soared and mortality rates have dropped dramatically. In the case of the best treatment centers, mortality rates have dropped below 1%, with no deaths reported over the last five or so years.

It’s very important to understand that there are currently two wholly separate and completely different approaches being explored for using stem cells to treat multiple sclerosis. Both hold tremendous promise but go about their business in entirely different ways, and care must be taken to never confuse the two. Regenerative stem cell therapies, almost all using some form of mesenchymal stem cells, seek to repair brain and spine tissues damaged by MS, while HSCT is focused entirely on the immune system and does not directly address damaged nervous system tissues at all. This post will deal exclusively with HSCT. For more info on the differences between these two stem cell methodologies, and more details on the experimental regenerative therapies, please refer to a previous overview of stem cell therapies for MS that appeared on Wheelchair Kamikaze last fall (click here).

So, first things first – what exactly is HSCT? In practice, HSCT is very similar to the bone marrow transplants that have been used to treat patients with leukemia and other cancers of the blood for decades. As a therapy for multiple sclerosis, the process begins by collecting a patient’s own stem cells, either through bone marrow harvesting or blood draws. Once collected, these stem cells are stored, and sometimes multiplied, in sterile laboratory conditions.

Then comes the dramatic part – the patient’s immune system is ablated (a polite way of saying destroyed) over the course of several days using powerful chemotherapy agents. Depending on the clinic treating the patient, a variety of drugs or combination of drugs is used, some more intense than others. The goal of this “conditioning regimen” is to leave the subject with no functioning immune system, obviously a very vulnerable state during which the patient must be kept in isolation to prevent exposure to any possible contaminants or infectious agents. While undergoing this conditioning regimen, patients typically suffer many of the common side effects of chemotherapy, including hair loss and nausea.

Once the immune system has been eradicated, the previously harvested stem cells are intravenously infused back into the patient’s body, where over the course of several weeks they rebuild the immune system, effectively giving the patient an entirely new array of immune cells. In theory, this brand-new immune system shouldn’t have the destructive tendencies that led their old immune cells to attack the patient’s own central nervous system tissues, the mechanism that is believed to cause the damage and lesions that give multiple sclerosis its name.

Though this may seem like a sledgehammer approach to treating MS, recent studies have shown HSCT to be astoundingly effective when used on properly selected patients. One recently published study followed 52 Swedish MS patients that were treated with HSCT (click here). At five years, relapse free survival was 87%, MRI event free survival 85%, EDSS score progression free survival 77%, and disease-free survival (no relapses, no new MRI lesions, and no EDSS progression) was 68%. The presence of Gadolinium enhancing lesions prior to HSCT was associated with a significantly higher degree of favorable outcome (79% exhibiting disease-free survival at five years). The study’s authors conclude that that “HSCT is a very effective treatment of inflammatory active MS and can be performed with a high degree of safety at experienced centers.” Other recent studies looking at the efficacy of HSCT have found similar results (click here and here). Outcomes such as these give ample reason to sit up and take notice, despite the admittedly frightening prospect of the use of intense chemotherapy conditioning regimens.

One must keep in mind that despite recent advances in treating MS with a new generation of immunosuppressant drugs, the disease in its most serious forms remains a brutal beast intent on laying waste to many of those it afflicts. Next generation MS drugs such as Tysabri, Gilenya, and Tecfidera are proving to be potent in managing the disease in those patients on whom they are effective, but these drugs must be taken indefinitely and each has their own set of possible serious side effects that give many patients pause. HSCT, on the other hand, is meant to be a one-time treatment, after which properly selected and treated patients are proving to show a remarkable degree of sustained disease-free existence, with some even experiencing a reversal in disability status (click here). While no responsible person is calling HSCT a cure for MS, and undergoing the treatment is no walk in the park (intense chemotherapy is serious business), years of disease-free life without the indefinite use of drugs is the stuff of most MSer’s dreams.

HSCT has been proven to work best on patients with very active inflammatory disease (those “properly selected patients” I keep talking about), meaning patients whose disease is marked by frequent relapses and enhancing lesions on their MRI images. Many if not most RRMS patients fall into this category, but unfortunately far fewer SPMS and PPMS patients fit the bill. Study after study (click here and here) has shown that the most important criteria for identifying patients on whom HSCT has the best chance of success is the presence of enhancing lesions as detected by MRI.

Enhancing lesions are a sign that the immune system is actively causing inflammation within a patient’s central nervous system, while the lack of enhancing lesions signals that the disease is being driven by some other, as yet undiscovered, mechanism. A comprehensive overview of HSCT results on MS patients worldwide conducted by Brazilian researchers came up with the following recommendations for selecting patients who might benefit from HSCT: “… the forms of the disease that might benefit from transplantation are: relapsing remitting, primary or secondary progressive, and the “malignant” form, provided there is evidence of inflammatory activity at the time of transplant indication.” These researchers further suggest that the treatment not be given to patients who have lost the ability to walk, with the exception of those suffering from extremely aggressive MS who have accumulated disability quickly. It’s also very important that patients be relatively healthy aside from their MS, hearty enough to withstand the rigors of a short burst of intense chemotherapy.

Unfortunately, as is illustrated by the above recommendations, many patients suffering from progressive MS are left holding the bag, as many SPMS patients and most PPMS patients don’t exhibit signs of active inflammatory disease (enhancing lesions), and thus likely would not be considered good candidates for HSCT. Eligibility for the treatment cannot be ascertained by disability levels alone, as the majority of PPMS patients never display signs of active inflammation (enhancing lesions) even when first presenting with the disease, when disability levels are in many cases barely detectable.

Throughout the world of MS research there is a growing recognition that early treatment is the key to reducing the impact of multiple sclerosis. In fact, many researchers and clinicians now talk of a window of opportunity before the disease becomes entrenched, when all treatment options have their best chance of success. This is the time when the immune system plays its most active role in the disease, and when enhancing lesions are most likely to be rampant. Because HSCT is not without risk and can be a difficult process to get through, it may be challenging for doctors and patients alike to be convinced that this treatment may be their best chance at diminishing the long-term physical impact of multiple sclerosis before that window of opportunity is missed. In fact, it may be a mindset that sees HSCT as too draconian that proves to be the biggest impediment to the widespread adoption of this therapeutic approach.

Despite the immense potential of HSCT, it’s important to understand at the deepest level that this is still an experimental treatment option. Although there is serious science backing the effectiveness of HSCT, protocols have yet to be completely standardized, best practices are still being ascertained, and large-scale trials are still underway (click here). HSCT has not been approved for the treatment of MS by any national or international regulatory body. Nevertheless, as might be expected, a medical tourism industry is springing up around HSCT, and more and more patients are traveling to different locations around the world to undergo the procedure. Websites and Facebook pages about HSCT are proliferating, with some spreading what at best be termed low-grade information. There is a wealth of anecdotal evidence in the form of legitimate patient testimonials confirming the effectiveness of the treatment (click here), but anecdotal evidence for any alternative treatment is almost always skewed heavily towards the positive (folks with negative experiences with such treatments, especially expensive ones, rarely post about them on the Internet), and more than a few of the Internet “resources” I’ve come across seem to be more marketing tools than reliable sources of actionable facts.

Therefore, it is absolutely essential that any patient considering HSCT educate themselves using the most scientifically legitimate resources available, and then educate themselves some more. One should never put complete trust in any patient driven source of info (this blog included), and special diligence should be taken when reading information supplied by companies and institutions offering, for a price, the treatment itself. Some of the best research papers I’ve read on HSCT can be found at the following links (click here, here, and here).

All of these caveats aside, Hematopoietic Stem Cell Transplantation could very well represent a major shift in the way MS is treated in the not-too-distant future, at least for a substantial subset of patients afflicted with the disease. HSCT is serious business, but so too is multiple sclerosis. Even though studies suggest that HSCT does not put a permanent stop to the disease (click here), the promise of many years of life free from any symptoms is enormously tantalizing, so much so that many patients are proving to be more than willing to take the plunge. One can only hope that as researchers perfect their skills and methodologies HSCT will become ever more safe and effective. While likely not the Holy Grail of a cure, HSCT could represent a significant step forward in treating this very ugly disease, albeit one that apparently and unfortunately has little to offer many of those most disabled by the illness, those stuck in the stranglehold of progressive MS whose disease is absent active inflammation.

The below video is a segment from the Australian version of the TV news magazine 60 Minutes, which traces an Aussie MS patient’s successful HSCT journey to Russia and back. Please note that this is not in any way an endorsement of the Russian clinic offering the treatment. In fact, as I was writing this article, news landed in my email inbox of a patient who died at this Moscow clinic while undergoing HSCT for the treatment of a rare disease called Stiff Person Syndrome (click here). Though the news states that HSCT was not necessarily the direct cause of her death, this should only emphasize the serious nature of this treatment regimen. Again, patient selection is the key ingredient to the success of this treatment. Patients must be physically strong enough to endure the taxing effects of the chemotherapy agents used during HSCT, the toxicity of which varies from treatment center to treatment center. One must guard against letting hope eclipse reason, but I know all too well that desperate times can call for desperate measures…


Sunday, July 13, 2014

Bits and Pieces: Writer's Block Edition (Also: Tecfidera, Crying Jags, the Price of MS Drugs, Underwater Wheelchairs, Asinine Research, and Some Funky Stuff)

(For those who receive Wheelchair Kamikaze via email, this post contains videos that can be viewed on the Wheelchair Kamikaze website – click here. They're really good videos, so I encourage you to check them out.)

I usually start these Bits and Pieces posts with thoughts and/or observations that have been rattling around inside my brain pan for the last several days or weeks, but somehow as I sit down to write this I’m experiencing nary a rattle. Truth be told I've been struggling with some writers block these last few weeks, pretty much for the first time since I started writing this blog over five years ago. I suppose it might only be expected after all of these posts, but geez, writer’s block sucks.

I suppose I could jabber on about how disappointed I am in the Boston Red Sox the season, or how much I’m looking forward to the new season of fantastic zombie TV show The Walking Dead (which doesn’t start until October, ugh), or how bummed I am that I missed seeing the new Godzilla movie in 3-D at the IMAX theater which is one block away from my apartment. Can you believe it? I LOVE Godzilla, and I missed the chance to see the beast from the deep in three dimensions on a screen 30 feet tall! How could I be so stupid?

Now, I don’t expect the new Godzilla movie to be anywhere near as good as the original 1954 Godzilla, and by original I mean the Japanese version, not the Americanized one that intercut scenes of Raymond Burr playing an American reporter in Tokyo during Godzilla’s onslaught into the sublime Japanese film, which is actually very introspective (well, as introspective as a movie about a prehistoric beast eating Tokyo can be), filled with nuanced references to Japan’s national angst about World War II, the horrors of atomic warfare, and the potential dangers of science run amok.

Speaking of Raymond Burr, did you know that he once owned his own private island in Fiji? I knew he was a successful actor who starred in some very popular TV series (Perry Mason, Ironsides) and had a very clandestine private life, but go know he had enough money to buy a private island. I sure would like a private island, although these days I guess a private island wouldn’t be much use to me, given my heat sensitivity issues and the fact that I don’t think sand and my wheelchair would get along very well. God, I hate having MS.

Okay, I guess that’s enough writing about nothing, so I might as well get to my latest collection of MS news items and other bits of info that have caught my attention and/or fancy over the past month or so. Hope you find them interesting, informative, entertaining, and worthwhile…

♦ The oral MS drug Tecfidera has been on the market here in the US for a little bit over a year, and a new study provides encouraging news about Tecfidera’s efficacy, while another furnishes some disconcerting data regarding the drug’s side effects. A paper released just this week demonstrates that Tecfidera is remarkably effective on newly diagnosed RRMS patients who have not previously been on other MS drugs (click here). Patients in the study took the drug either two or three times a day, and researchers found that Tecfidera reduced relapse rates by 56% and 60% in these groups, reduced the risk of relapse by 54% and 57%, reduced the number of new or enlarging lesions by 80% and 81%, and reduced Gadolinium enhancing lesions by 92%, when compared to patients taking a placebo. These numbers place Tecfidera amongst the most effective MS drugs available. No word yet on the effectiveness of the drug on patients who have had the disease for a longer duration, or who have already been on other treatments, but one would imagine that similar rates of effectiveness should be expected.

On the downside, another study looking at Tecfidera’s side effects found that gastrointestinal problems and flushing were reported by large numbers of patients taking the drug (click here). Although more serious side effects (such as opportunistic infections) were not reported, researchers found that gastrointestinal problems were severe enough to force roughly 10%-25 % of Tecfidera patients to stop taking the drug, depending on the MS clinic providing the data. Over 50% of Tecfidera patients required some kind of over-the-counter medications to help combat the initial side effects of taking the drug, although the majority of patients noted that these side effects subsided within three months of starting the drug. Seems that similar percentages of patients (10%-25%) experienced few if any side effects, and physicians are trying to find ways to ameliorate the incidence of side effects in their Tecfidera patients.

So, definitely a mixed bag on the Tecfidera front. Highly effective on the one hand, problematic side effects on the other (although no deadly side effects so far, thank heavens). As with all things MS, it seems it’s never easy…

♦ On one of the Internet MS forums I occasionally visit, a member was worried that they might be “cracking up” because they found themselves laughing or crying – sometimes uncontrollably – at the drop of a hat, and often at inappropriate moments. A little light bulb went off in my head (yes, I have light bulbs in my head, and they’re all of the old-fashioned incandescent variety) and I remembered a little known and talked about MS symptom called the pseudobulbar affect (click here). PBA, as it is called, is a symptom seen across a wide variety of disorders of the central nervous system which makes those afflicted with it highly prone to laughing and/or crying fits, usually completely beyond their control.

As might be expected, pseudobulbar affect can be very disturbing to those MS patients who suffer from it, especially if they don’t know that their out of whack emotions might be a symptom of their disease. A recent study found that about 10% of people with MS suffer from PBA (click here), so it’s more common than might be expected. Here is a little online quiz to check if you might have PBA (click here), thoughtfully provided by the drug company that (surprise!) makes a pill to combat it. Yes, there’s a pill for that! It’s called Nuedexta (click here). Now, this is just a guess, but I bet the pill is obscenely expensive. Hey, I just did a little googling (honestly, I did) and found that Nuedexta costs a mere $600 a month. Yikes! Yes, the price of MS meds forces one to laugh to keep from crying, and that has nothing to do with pseudobulbar affect.

♦ Speaking of the high price of MS drugs, five multiple sclerosis medications landed on a list of the 73 drugs whose prices have increased the most since 2007 (click here). Since that time, the price of Copaxone as increased 157%, Rebif 154%, Avonex 147%, Betaseron 133%, and Tysabri 102%. Given the fact that the first four of these drugs (the CRAB drugs) are the oldest MS “disease modifying therapies” and have been on the market for at least 15 years, one would expect their price to have decreased with time rather than increase. Apparently, though, logic plays no role when it comes to pricing MS drugs (and most other drugs, for that matter), as drug companies try to squeeze as much profit as possible out of their older drugs before patents expire and generic alternatives become available. Can’t say this isn’t a winning strategy for the drug companies, since Copaxone generated $4,000,000,000 (!) in sales last year and was the highest grossing MS drug on the market. Is it any wonder that more progress towards finding a cure hasn’t been made when huge gobs of money are being pocketed by keeping MS patients dependent on drugs that only “modify” the disease and most medical research is funded by the companies pocketing those gobs of money? An old saying about geese and golden eggs springs to mind.

♦ Okay, enough about drugs and drug companies, let’s move on to other vistas. How about some underwater ones? In this video (part of the terrific TED Talks series), artist Sue Austin takes my Wheelchair Kamikaze concept to new heights, or, more correctly, depths. After an extended illness left her disabled, Ms. Austin found the world shrinking, a feeling many of those with MS know all too well. As she eloquently expresses in the below video, before getting her wheelchair and exploring all of the potential it presented, she had internalized the limitations and dependencies that society seems subconsciously to want to impose on the disabled. When she got her powerchair, though, her world and all the possibilities contained within it suddenly burst wide open. The chair allowed her to explore unexpected directions in her visual artwork, and ultimately led her to take this new mode of creative expression under the sea. Yes, Sue Austin scuba dives in her wheelchair, and with style. Incredible, beautiful, and inspirational…




♦ The folks at the Made Strong company (click here) offer T-shirts and other items bearing their “Made Strong” credo, and they donate 10% of their profits to worthy causes (for MS, these monies go to the Race to Erase MS). I’m typically turned off by feel-good slogans and platitudes, especially when they have to do with the disease that has taken a wrecking ball to my life. The phrase “I Have MS but MS Doesn’t Have Me” makes me want to poke my eyeballs out with red-hot knitting needles. But there’s something about “Made Strong” that strikes a chord. There’s very little good I care to say about multiple sclerosis, but I do have to admit that struggling with MS and all the BS that goes along with it has made me a mentally stronger person even as the disease has whacked away at my physical self. I’m no longer the neurotic, anxiety riddled person that I used to be back in my healthy days. Dealing with this illness has led me to me confront some of my darkest fears and even my own mortality, forcing to the surface a mettle I honestly didn’t know I possessed. So, yeah, Made Strong, an MS slogan I can live with.

The Made Strong people have generously offered a 10% discount to Wheelchair Kamikaze readers. Just use the promo code WCK10 when ordering. (Full disclosure: Made Strong sent me a free T-shirt to introduce me to their products. Does this make me guilty of accepting a bribe? Maybe, but I promise that I wouldn’t have given them a word on this blog if I didn’t appreciate the sentiment expressed on their goods. I guess everybody has their price, but I’d hate to think that mine is as cheap as a T-shirt. Note to other product manufacturers: sending me free stuff will NOT guarantee you a place on these pages, but, on the offhand chance you’re interested, I do like cameras, vintage NYC World's Fair memorabilia, and exotic chocolates. Also, I really enjoy giving my wife jewelry, so diamonds 1.5 carats or larger set in white gold or platinum might get you a Wheelchair Kamikaze shout out. Just saying.)

♦ Okay, time for another installment of… asinine research (the crowd roars)! I’ve come across yet another study having to do with MS patients falling down (click here). What is it about multiple sclerosis and falling down that so fascinates researchers around the world? Seems to me that the two go hand-in-hand, MS and falling down, sex and pregnancy, beans and cornbread. This has to be the third or fourth “falling down” study I’ve featured here on WK, and I’ve passed up a few along the way.

Okay, so, this study compiled the results of a bunch of different studies from Australia, Sweden, United Kingdom, and the United States. Wait a minute, that’s three English-speaking countries out of four, and I’m pretty sure a lot of Swedish people speak pretty good English, so this immediately casts doubts on the validity of these results. Dammit, this study is biased against non-English-speaking multiple sclerosis patients who fall down! What, falling down in other languages doesn’t count? Don’t we all say “ow” when we fall down, no matter what our native tongue? If you prick us, do we not bleed? Must we constantly erect artificial barriers that keep us from seeing ourselves as one big family of man, instead giving way to tribalism and divisiveness, even when researching as eternally perplexing a subject as whether or not people with a potentially crippling disease fall down? Oh, the humanity!

Despite its jingoistic tendencies, this falling study does break some new ground (pun intended) as it defines MS patients who fall down as either “fallers” (those who fell only once during a during a three-month span) or “frequent fallers” (those who fell twice or more during the three-month span). My question is, do frequent fallers get some kind of gifts or rewards, like frequent flyers? Do they have exclusive access to luxurious waiting areas in their neurologists’ offices, replete with thickly padded floors and walls, where their every whim will be catered to as they tumble and crash to the ground? I mean, what good is it to qualify as a “frequent faller” if you can’t rack up those frequent faller points? Does accumulating enough frequent faller points allow for some kind of upgrade, like maybe to a neurologist who actually gives a shit? Of course, this study does nothing to address these issues. Stupid researchers.

What this study does reveal is shocking, simply shocking! “Most falls occur indoors (65%) between 6 AM and 6 PM (75%).” Gee, that couldn’t be because most MSers with mobility issues tend to spend a lot of time indoors, and – I’m guessing here, probably need to research this more fully – most falls don’t happen while sleeping, could it? “Primary progressive MS was associated with significantly increased odds of being a faller.” Who would’ve thought, given the fact that the most common first presenting symptom of PPMS is gait disturbances, that this form of the disease would lend itself to going kerplop? “Fall risk peaked at EDSS levels of 4.0 and 6.0…” Hmmm, EDSS 4.0 is defined as “fully ambulatory… despite relatively severe disability” and EDSS 6.0 calls for “intermittent or constant assistance (cane, crutch, or brace) required to walk about 325 feet”, so this study finds that patients whose disease has progressed far enough to produce “relatively severe disability” but not far enough to put them in a wheelchair face the greatest danger of taking a dive. Is Captain Obvious one of the authors of this paper? For their next research project, I suggest the authors study whether or not hitting yourself hard on the head with a hammer can cause a concussion. Hopefully by testing the hypothesis on themselves.

Seriously, though, the issue of PwMS suffering numerous falls is no joking matter, as I’ve known several folks who have really hurt themselves after taking a tumble. Here’s a page (click here) with some common sense tips on things that can be done to help prevent falls whether or not you have MS. And for all my MS friends out there, I think my best advice is to just use your head, and not as landing gear. I know we can all be very obstinate and loath to “give in” to the disease, but a broken hip or gashed forehead is too high a price to pay for pride. If you need help, ask for it. If doing something that used to be easy has become nearly impossible, just don’t do it, at least not without assistance. Easier said than done, I know, but MS can do enough damage without your giving it a helping hand.

♦ In my last “Bits and Pieces” post I concluded with a video by the musical artist Paolo Nutini, one of the musicians who are part of the neo-soul/retro-soul movement, making music that hearkens back to the funky, soulful sounds of the 1960s and 70s. Lots of readers commented on how much they enjoyed the video, and since I’m absolutely addicted to the stuff, I figured I’d make examples of the genre a regular part of these little compilations. So, feast your ears on Mr. Charles Bradley, who pours his guts out on every track he records. Part of the Daptone Records stable of artists, Charles Bradley may be considered a new artist, but he’s no young pup. He recorded his first album at the age of 62 in 2011, backed by the relentlessly funky Manahan Street Band. Mr. Bradley has lived a life filled with hardship and heartache, and his musical emergence is so unlikely that it’s almost impossible to believe. It’s captured in a terrific documentary called “Charles Bradley: Soul of America” (click here), which can be viewed on Amazon Prime streaming video. Throughout a lifetime spent living a hardscrabble existence, at times practically homeless, Bradley picked up gigs as a James Brown impersonator, an influence unmistakable in his recorded output.

So, without further fanfare, here is the righteous, mighteous, and out of sighteous Charles Bradley…

Sunday, June 29, 2014

Me, In Front Of The Camera (Yikes!)

(For those receiving this via email, this post contains a video which can be viewed at the Wheelchair Kamikaze website – click here)

As is evidenced by the Wheelchair Kamikaze videos and photos that are part of this blog, I’m very comfortable behind a camera. In front of a camera, though, not so much. This might seem strange given the fact that I don’t have much of a problem “revealing” myself through my writing, and I’m not exactly a shrinking violet, but I usually react like I just got too close to the tail end of a flatulent moose when viewing images of myself or hearing recordings of my voice. Many so-called primitive cultures believe that capturing a person’s image or voice steals a bit of their soul, and on the off chance that they’re right I’d much rather be the thief than the thieved. You can never have enough soul whether you're talking about things mystical or musical, and anyone who knows me can tell you that I just can’t get enough of that funky stuff. Holla!

Be that as it may, last summer I was contacted by a producer from the website EverydayHealth.com (click here), who wanted to know if he could put together a video for the site featuring me and my blog. As an added incentive, I was told that I’d be interviewed on camera by none other than Dr. Sanjay Gupta, a famous doctor and television personality who makes numerous appearances on CNN, CBS, and other media outlets. Dr. Gupta is also a practicing neurosurgeon, which further piqued the interest of this “atypical” MS patient. Additionally, I was told that Everyday Health wanted the video to include my lovely wife Karen, who deserves as much praise and credit as can possibly be heaped upon her. So, given this ever enticing witch’s brew of enticements, how could I say no?

Shooting the video took two days, or eight months, depending on how you look at it. Late last August – on my birthday, as luck would have it – Karen and I met Dr. Gupta and his video crew in lower Manhattan near Wall Street, where the good Doctor interviewed me as we walked/rolled along the city streets, talking about what it's like to use a power wheelchair in the crowded metropolis. Since time was short, we made plans to finish the video sometime in the next few weeks. My big fat rat bastard of a disease then reared its ugly head when I had a bizarre and totally unexpected reaction to a medication called Acthar Gel, which had me laid up in bed until the end of November (click here). By that time winter had set in and we decided to put off finishing the video until better weather arrived in the spring. Shooting was finally completed in May, and Everyday Health posted the edited video and a much too kind accompanying article on their Internet site a few weeks ago (click here).

Despite the fact that I may have lost a few bits of soul to the production, I think the Everyday Health crew did an exceptional job on the video and the written piece that goes along with it, the combination of which had me blushing for days. I’d like to give my heartfelt thanks to Dr. Sanjay Gupta, producer/writer Nils Kongshaug, and videographer/editor Michael Bush for doing such a bang up job on the entire production. Truly, I am not worthy (but Karen is)…

And so – drumroll, please – here’s Everyday Health’s Wheelchair Kamikaze video…


Sunday, June 22, 2014

Must Watch TV – "When I Walk" Airing Monday, June 23

Last year I wrote about a remarkable MS themed film called When I Walk that was making the rounds of local film festivals. In part funded through a Kickstarter crowdfunding campaign, When I Walk proved to be a tremendous success, winning numerous awards and garnering impressive critical praise (click here and here). Though the documentary saw some nationwide and worldwide distribution, it was screened at only a relative handful of theaters, preventing it from being seen by the widespread viewership it so richly deserves. On Monday night, June 23, When I Walk will finally get its chance to reach the masses here in the United States, with a television debut on the PBS series "POV" (click here). In the New York City metropolitan area, the film will air at 10 PM, please check your local listings for air times in your area. When I Walk will also be available for viewing online from June 24, 2013 to July 23, 2014. (Update: seems that the film will be showing on different days in different cities. Please click on the "POV" link, above, to check when When I Walk will be shown in your local area. I've also learned that many Canadian locales also get PBS, so WK readers in Canada should check their local listings.)

When I Walk is the work of Jason DaSilva, a young filmmaker whose previous films have been featured at film festivals around the world. About nine years ago, at the age of 25, Jason was struck with progressive MS and decided to turn his camera on himself. His documentary When I Walk chronicles the first seven years of his struggle with PPMS in unflinching fashion, showing the effects of the disease warts and all even as it exposes the heart and soul of the man at the center of the storm. When the film opens, Jason is having some trouble walking; by its end he’s using a scooter full-time, his vision is increasingly affected, and the disease is attacking his hands to the extent that he needs help completing the movie. In between, we experience the physical and emotional roller coaster of MS as Jason searches for answers, possible cures, and even miracles. Though one might think this would make for gloomy subject matter, the film is an inspiring testament to Jason’s courage, the power of love, and the enduring nature of the human heart. Even as Jason’s body betrays him, he manages to find his soulmate, a woman special enough to love him despite all of the trepidation and uncertainties that come with MS.

Unlike the usual public face of MS, which typically features MSers climbing mountains or celebrities with MS "dancing with the stars", When I Walk gives us an unvarnished view of the realities of multiple sclerosis, a picture of the disease rarely seen by the public at large. For that alone the film deserves heaps of praise; the fact that When I Walk manages to inspire and illustrates the strength of the human spirit despite never shying away from the uncomfortable facts of life with progressive MS is testament to the artistry of the filmmaker, and makes the film "must watch" material for those both inside and outside of the MS community.

Here’s the When I Walk trailer:



It'd be terrific if Wheelchair Kamikaze readers left their impressions of the film in the comments section of this post…


Monday, June 16, 2014

The Great Pretender

(For those receiving this via email, this post contains a video that can be viewed on the Wheelchair Kamikaze website-click here)

Yes, I'm the great pretender
Just laughin' and gay like a clown
I seem to be what I'm not, you see
I'm wearing my heart like a crown

– “The Great Pretender”, the Platters, 1955

It’s strange when a phrase or quote that you’ve long known takes on new meaning due to changed circumstances. Such is the case for me with the lyrics of “The Great Pretender”, a song made famous by the doo-wop/R&B group The Platters in 1955. The tune has long been a part of the playlist in my brain. As the song goes, “yes, I’m the great pretender…”, only now I’m pretending in ways most likely never imagined by the lyricist.

A few weeks ago I had a late lunch with a fellow MSer in a famous restaurant nestled on the outskirts of Central Park called Tavern on the Green. We ate underneath an umbrella in the outdoor patio portion of the newly refurbished eatery, an idyllic spot on a glorious spring afternoon. My friend has a sharp wit and is wickedly entertaining, and she and I whiled away several hours lost in conversation and good food. Our chat ranged far and wide, but, as might be expected from two people dealing with multiple sclerosis, the topic of our shared foe came up at regular intervals, not in any maudlin way but more as the subject of information exchange and the occasional sarcastic verbal jab.

While we ate, me in my wheelchair and my friend with her cane resting beside her, the rest of the world buzzed around us, for the most part as oblivious to us as we were to it. Insulated in our own little bubble, we conjured an atmosphere of normalcy despite our abnormal physical situations, just a couple of gimps jabbering away, all the fleet footed and nimble fingered be damned. After lingering for quite a while, we finally finished our meal, paid the tab, and wheeled (me) and limped (her) our way out of the establishment, where we’d pleasantly spent a very rich few hours.

Just a moment or two after exiting the restaurant, though, my friend suddenly burst into tears.

“What’s wrong?” I asked, naturally alarmed.

“Look!” she sobbed, pointing at the broad inner roadway that circles the circumference of the park, which had become a blur of joggers and bicyclists. “I can’t do that anymore, and I want to.”

Our bubble had been burst and harsh reality rushed in to fill the vacuum. Crap. I felt a black hole tearing at the center of my soul. I reached my one good but weakened hand out to hold hers and hesitantly stammered, “I know… I know." Hackneyed platitudes dressed up as words of wisdom just weren’t going to cut it. This great pretender could do nothing more than share the hurt.

Though I like to think that I have successfully mastered the mantle of noble warrior, steadfastly staring into the eyes of the beast that is my creeping paralysis without any cloak of self-delusion, the plain truth is that in the years since my diagnosis I’ve become well practiced at the art of illusion, wielding psychic shields to protect myself from the sharper and sharper barbs of my increasingly dire situation. I guess this is only natural, a survival mechanism hardwired into our brains to help us cope with even the most dreadful of circumstances. Denial may be one word for it, but I think it’s more a subconscious reshaping of reality than a refusal to see things as they are, a sculpting of perception to create a much-needed psychological zone of comfort and safety. Of course, reality is always in the eye of the beholder, cross your peepers hard enough and even the most cockeyed of situations can appear straight as a desert highway.

Safe in the cocoon of my apartment, my increasingly dysfunctional existence has indeed become “normal”, the countless allowances made to the ravages of the disease rendered commonplace over time. Living with progressive MS is an exercise in constant adaptation; with incremental losses come a never-ending series of incremental workarounds. The disease has slowly left me with a right side that is completely on the fritz and a left that is continually weakening, transforming once mundane tasks into exercises in ingenuity and tenacity.

Sheltered within the cozy confines of my sanctuary here on the 18th floor of my high-rise building, all of the crazy workarounds and elaborate but clumsily choreographed routines that get me through the day seem almost ordinary. Within these walls my rather bizarre life has become the norm, allowing me the luxury of just being me, warts and all, negating any need for pretending. Sure, there are times throughout even days spent entirely alone at home when I’m hit with “holy shit, I’m a cripple” moments, instants awash in incredulity, but by and large, left to my own devices, I can relax and be myself in the self-contained topsy-turvy MS riddled world of home.

The Great Pretender springs into action once I venture out into the world, where reminders of my mangled reality are everywhere. It starts the moment I leave my apartment. Waiting for the elevator, I sit in my chair hoping beyond hope that when the doors open the car will be empty, saving me the spectacle of watching my fellow building dwellers scramble out of the way of my mechanical monster, my oh too cheerful apologies mixing with their forced graciousness in a perfect illustration of the human capacity for polite bullshit. Once out of the elevator I watch my instantly effervescent doorman rush to open the building’s doors wide for me.

“How are you today Mr. Stecker?” he asks just a little too enthusiastically.

“Better than those goddamned Mets,” I respond, and then we both force a laugh (for those blessedly unacquainted with The Mets, they are New York’s notoriously pathetic baseball team). In truth I appreciate these attempts at perfunctory pleasantries, while at the same time resenting the fact that I require added attention. And then it’s out into the bustling metropolis, where The Great Pretender kicks into high gear.

I love the city, I love being out in the city, but Gotham’s very nearness and dearness to my heart exposes that fragile little organ to the slings and arrows of my outrageous misfortune. All around me there are people doing wondrous things, walking and jogging and climbing stairs, driving and texting and holding hands, all with effortless grace and dexterity. They’ve no idea how lucky they are, just as I didn’t when I was so incredibly fortunate to be one of them.

Ass firmly planted in chair, I take on various roles as I roll through the town: observer, photographer, crazy Wheelchair Kamikaze, speeding through the streets so as not to let envy catch up and turn me green as a Martian. Shields up I deflect whirlwinds of emotion, psychological tornadoes shunted aside by the storm shelter of the Great Pretender. I honestly enjoy careening around the sidewalks of New York, though as my “good” arm and hand continue to weaken even that pleasure is becoming blunted. Still, there’s plenty to occupy the mind while at the controls – don’t hit that pothole, sure hope that pigeon is quick to the wing, watch out for the precocious scooter kid!

Once I arrive at my destination, other concerns take hold as there’s less to distract me from the facts of my broken down state. If I’m out for a jaunt by myself, say to the park or to the river, I mindfully try to soak up the scene and not let my sense of otherness overwhelm and ruin the moment, not always easy but doable while alone and left to my own devices. Things change in the company of healthy friends or family, when I somehow feel responsible for keeping them at ease with the situation, almost automatically conjuring a sense of nonchalant joviality that belies the gravity of my predicament. The Great Pretender wears thin armor and a welcoming smile.

What a great attitude, others sometimes marvel, even as I sit secretly coveting not only their hale bodies but also the problems that occupy their hearts and minds. Is that a horrible admission, that I’m jealous of the very same issues that often had me tied up in knots back in my healthy days? Problems that could be solved either through action, a change of mindset, or simply the passage of time? This implacable illness has no such solutions, thus far defying every effort to even just slow it down. Barring some incredible medical breakthrough, these are wounds that time won’t heal but in fact will only make worse, a truth I hardly want to admit to myself much less discuss with anyone else, other than the closest of the close.

As my disease progresses, maintaining psychic equilibrium in social settings requires more and more conscious effort. It’s hard to get lost in dinner conversation when your increasingly gimpy hand has trouble manipulating a fork. Such social outings are double-edged swords; they offer much-needed distraction and social interaction while at the same time putting a focus on just how much I’ve lost to this slowly exploding atomic bomb. My efforts at illusion aim not only to comfort others but myself as well. The approximation of “situation normal” that The Great Pretender endeavors to maintain is a way of breathing life into the me that used to be, the embers of which I’m afraid are slowly being doused. It’s good therapy to get lost in the occasional game of make-believe, but gosh it can be exhausting when the illusion is so easily shattered, when all that used to be taken for granted sits balanced on a razor’s edge, when looking down reveals an emaciated right hand curled into a claw. A physical and psychological juggling act of increasing complexity, socializing with friends has its rewards but also it's price. I usually find myself totally spent after such activities, needing days to recharge.

When I’m out with fellow MSers, it’s a somewhat different story. Regardless of the stage of their disease we share a common burden, and that sharing helps to lessen the load. Members of an exclusive club that none of us wanted to join, we speak a language that outsiders would at times be hard-pressed to understand. Even out and about in the great big land of the healthy a couple of gimps can carve out a world within a world. It can be exhilarating to talk about the ugliness of MS with someone else who just gets it, no explanations necessary. Speaking of things that to others might seem unspeakable can be a tremendous relief, a chance to purge and breathe deep. This sense of sharing creates its own temporary normalcy, and yet, as was the case with my friend as we left Tavern on the Green, the outside world has a way of shattering even collective illusions.

In a sense we are all The Great Pretender, revealing different sides of ourselves to different people, wearing different faces in different situations. In part, we choose our friends and lovers based not only on who they are but on the person they allow us to be. Chronic progressive illness digs deep, throwing a mass of new variables into the equation, increasing exponentially the complexity of the elaborate social dances in which we all engage. As the disease takes hold fundamental changes take place, not only physical but mental, changes visible and invisible that can be so traumatic that they shake our foundational notions of self. Protectively and instinctively I insulate body and mind, creating pockets in which my new decidedly not normal becomes normal, but the world outside still beckons, the company of others still calls. Though beyond the comfort zone lays the potential for peril, I venture forth with a spirit – at once both real and contrived – intended to bolster myself as much if not more than others.

And so yes, I’m The Great Pretender…

Thursday, June 5, 2014

Remembering Robert Kennedy

Attorney General Kennedy and Rev. Dr. Martin L...

Image via Wikipedia

(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted three years ago, in 2011. Given the current ruinously cantankerous political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this post is as relevant today as it was 46 years ago, and should be taken to heart by those of all stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website – click here)

I am a man with few heroes.

It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 46 years ago today.

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiably gossip hungry media. Back then, there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been achieved. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against societal injustice for the weak and disenfranchised.

Robert Kennedy started his political career working in the office of the now justifiably defamed Senator Joseph McCarthy, who at the time was in the midst of his vile early 1950s anti-Communist witchhunt, which resulted in the destruction of the reputations and livelihoods of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis.

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968.

Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of Americans one can only imagine that the arc of history could very well have been much more benign than the reality that ultimately came to be. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss.

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts, much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination.

Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…



Rest in peace, Bobby Kennedy.

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