New Year’s Eve Through MS Eyes

(This essay was first posted two years ago. Guess this makes it a golden not so oldie, but it's timely and the sentiments expressed will hold true as long as MS remains my unwanted life partner…)

Back in in the days before I got jumped by MS I always loved New Year’s Eve. While many of my fellow habitual night crawlers derided the night’s festivities as “amateur’s hour”, a time when those less accustomed to nocturnal hijinks were apt to get sloppy and make fools of themselves, I embraced the ringing in of the new year con mucho gusto. Never content with just one party for the duration of the night, my friends and I would go on a kind of New Year’s Eve tour, hitting four or five shindigs and nightclubs before heading home well after dawn on January 1. The sentimentality of the holiday, with its tacit promises of sins forgiven and futures bright with hope held me in its thrall.  Though I seemed to live in a state of perpetual neurotic dissatisfaction, I also brimmed with expectations that bigger and brighter days were waiting just over the horizon. New Year’s Eve was the one night a year that this heady brew of emotions and expectations were codified into celebration, to be shared with friends and strangers alike.

For sure, my fondness for the holiday has its roots in my early childhood. My mom and dad divorced when I was three, and for several years after the split my mom and I lived with my grandmother and my unmarried aunt. On New Year’s Eve my young, single mom – who herself loved the nightlife – would head out with her friends into the NYC of the swinging 60s, and my grandmother, aunt, and I would watch Guy Lombardo and his Royal Canadians playing old timey big band hits for the well-heeled crowd at the Waldorf Astoria Hotel, broadcast live to our ragged black and white console TV. We didn’t have much money and lived in a building in the Bronx that was closer to a tenement than a high-rise, but our lack of means did nothing to diminish the excitement and expectations of the evening.

Though I was only four or five years old, on New Year’s Eve I was allowed to stay up till midnight to take part in a family tradition that stretched back decades. We didn’t have any fancy noisemakers or horns, but at the stroke of midnight, as confetti and balloons floated down on the well to do at the Waldorf and Guy Lombardo’s boys played “Auld Lang Syne”, my grandmother, aunt, and I grabbed sturdy but well-worn metal pots and pans. Then, using big spoons as drumsticks, we burst into the hallway of our apartment building, banging with joyous intensity on those old, scarred cooking implements, creating a raucous racket and shouting at the top of our lungs “Happy New Year’s!” Most of the other residents of the building joined us in creating a jubilant and low rent but somehow defiant cacophony, delirious and intoxicating stuff for the very young me. I daresay that for those few moments we had a lot more fun than the swells at the Waldorf.

When I grew older, as a young adult I fully embraced the revelry of the holiday. I had quite a few memorable New Year’s Eves in my late teens through my mid 20s, from seeing the new wave band The Waitresses playing a show at 5 AM at the famous Peppermint Lounge to bumming cigarettes from a then barely known Howie Mandel at an MTV “after party” that rollicked on and on as if it might never end. I recall with great fondness stumbling out of a nightclub with a group of deliriously intoxicated friends and madly howling at the moon as the last seconds ticked away on one long ago year. As I transitioned into full adulthood, mixed in with raucous annual celebrations were the occasional intimate, more romantic New Year’s get-togethers with lovers and close friends. No matter the circumstances, though, the night never passed without champagne and good cheer, and always kindled within me expectations of bigger and better things to come.

Now, nearly 13 years since I was diagnosed with Primary Progressive MS, the night carries with it a much more complex and troublesome mix of emotions. For the first several years after my creeping paralysis struck, while I was still relatively able bodied, my wife and I would host New Year’s Eve parties, more sedate than my revelries of the past but good times nonetheless. Now, with my body increasingly compromised and my stamina waning, even a small gathering of friends can prove taxing. This New Year’s it was just my wife and me watching celebrations from around the world beamed into our living room in high definition on our big-screen TV, images so crisp and detailed it seemed as though I could step right into them. That is, if I could step.

Despite my best efforts to stay fixed in the moment, I soon found it impossible to watch millions of people celebrating without enviously contrasting their situation with my own. With nary a thought given to their tremendous good fortune at simply having limbs and senses intact, the televised multitudes danced and sang, drank and strutted, laughed and hugged and mingled and voiced exuberant expectations about a future brimming with possibilities. Lubricated by flowing booze and the magic of the night, all could convince themselves that the coming days held better fortunes then those which now belonged to history.

For the healthy masses, New Year’s Eve crystallizes the reality that the future is but a blank canvas, the images to be painted on it not predetermined but subject to the will of each individual. All but the most intransigent of difficulties will give way to effort, ingenuity, and discipline. Reality is but a construct of the human mind and the emotions it creates, and as such can be born anew once the self-defeating habits of the past are no longer allowed to dictate actions in the present. Not that these kinds of changes are easy, but with sound body and mind anything – anything – is possible. Sadly, it took my getting sick for me to fully understand this, but there is no greater truth.

And here I sat in a wheelchair – a wheelchair, goddamnit – trying my best to not begrudge the healthy, to vicariously share in at least some of the delirium, to laugh along with them and not let the sneaky tears that kept making their way to the corners of my eyes expose the turmoil that roiled within. There is indeed a reason they call progressive disease progressive. Physically, this last year has been a rough one, with old symptoms getting noticeably worse and new ones breaking the surface. Activities that could be accomplished with relative ease just a year ago are now at times tortuously difficult, and some of those that had been difficult have become damn near impossible. And by activities I don’t mean anything as devilishly complicated as walking or tying a shoe, but rather firmly gripping a fork, or struggling into a sweater, or on bad days, even just staying out of bed for more than four or five hours at a time. 

Unlike those healthy New Year’s Eve revelers on TV, no amount of willpower or change of habits will arrest this bitter physical decline. Though for the most part my spirit stays strong, in the face of this insidious physical onslaught and its accompanying indignities I find it impossible to not at times give way to the weight of it all, having my breath taken away daily by the shocking realization that this is no dream that I can wake from, but instead a concrete reality in which I am being forced to watch myself slowly wither away. The mantra of “staying in the moment” does help to keep me grounded, but there are also times when the moment just sucks. Though I can and do fantasize about a future free from illness, my utter conviction to stare this bastard straight in the eyes lands such fantasies well into the realm of the far-fetched, right there alongside my old dreams of becoming the next Mick Jagger or Philip Roth.

New Year’s Eve is a time to look back and project forward, and for the healthy this shedding of the old and embracing of the new can be cathartic, if even just for a few hours. This New Year’s brought me no such respite, though, as a look back illuminated the losses suffered these past 12 months, and peering too deep into the future can be perilous, a glimpse at the dark at the end of the tunnel, a glance at an unthinkable void. 

Yet I am not without hope. I keep myself immersed in the latest research and MS news, and though much of it is, quite frankly, garbage, there are approaches that do show promise. Perhaps I am delusional, but even through this morass of illness and increasing disability my resolve to not back down sometimes bends but doesn’t break, even as I acknowledge that merely stabilizing my disease state is at this point quite a longshot. But I know for a fact that sometimes longshots do come in. After all, I’m a guy who once won $15,000 in the Florida lottery, so I’m proof positive that you’ve got to be in it to win it.

So, as I sat there watching the partiers on TV, wrestling with my complicated and disconcerting mass of emotions, when the clock struck midnight I chugged some champagne and kissed my wife, while my inner five-year-old banged on pots and pans and screamed at the top of his lungs, “Happy New Year’s!”…

All I Want for Christmas Is a Cure for This Damned Disease!

(For those receiving this via email, the following post contains videos which can't be viewed in email clients. Please visit the Wheelchair Kamikaze blog page to view videos (click here).)

I had a slight meltdown while serving as a semi-official MS patient advocate last week. Please let me explain…

I was invited to take part in a conference call organized by a significant multiple sclerosis consortium. The group is planning an MS conference which will take place over several days, with one of the days devoted to patients and patient education. My purpose on the call, along with several other patient advocates, was to help decide which seminar topics would be most interesting and useful for patient attendees of the planned meetings. In advance of the call I was supplied with a list of potential subjects and was told to be ready to choose which I thought should be included as part of the conference program.

As I perused the list, which included items such as "2018 MS Drug Pipeline" and "Mindfulness and MS", I found myself surprised and then increasingly angered by one glaring omission: there was no mention at all about the search for a potential cure for MS. This annoyed me to no end. After all, shouldn’t one of the primary goals of every MS Association, researcher, and neurologist be figuring out how to put themselves out of business by curing this damned disease? I thought it quite telling (and nauseating) that the planners of this MS conference hadn’t thought enough of this subject to even include it as part of the equation.

Despite assurances to myself that I would remain calm during the conference call, once it came my turn to speak I just couldn’t help myself. What began with my evenly pointing out that the prospect of a cure had somehow been overlooked quickly devolved into a sputtering, barely coherent chastisement of the entire MS medical establishment. Let’s not forget, the field of MS neurology was not so long ago considered a medical backwater, but has since been transformed into one of the biggest cash cows in all of modern medicine, all on the backs of outrageously expensive pharmaceutical products that may curtail disease activity but do absolutely nothing at all to cure MS.

Is this really where the MS status quo now resides? A place where we must accept that disease management is the best we’re going to get? Where patients struck with a hideous illness should be content or even grateful that the modern medical divinities have graced some of them with the ability to keep their potentially crippling malady in check for who knows how long? Where the torrents of cash generated by insanely priced drugs have so corrupted the MS establishment from top to bottom that the prospect of a cure seems unfit for conversation in polite company – why, for fear of spooking the goose that lays perpetual golden eggs? And what about those of us with progressive disease, who now have a whopping total of one approved drug that might, just might, slow the insidious decline of a subset of us by a less than dazzling 20%-25%? I readily admit that the disease modifying drugs currently available do dramatically improve the quality of life for many of the patients taking them– they also carry with them long lists of frightening and sometimes fatal side effects – but they do nothing at all towards stomping out MS. Forgive me for not genuflecting at the feet of the MS gods. How about this? Come up with a drug that cures my creeping paralysis and I’ll genuflect my ass off.

Some of the other patients on the conference call responded to my little tirade by saying that they’d given up hope for a cure in their lifetime. Though I do understand the frustration that lies at the root of this sentiment, to that I respectfully say “bullcrap”! Each of the top-selling MS drugs generates profits measured in billions of dollars per year; you’d think that some of that money might be spent looking for the cause of and then cure for multiple sclerosis. Instead, we have pharmaceutical companies devoting more money to marketing than to research (click here), and the funds that are spent on research are almost exclusively directed towards finding newer and better ways of manipulating the human immune system. NEWSFLASH TO MS RESEARCHERS: the aberrant immune response seen in MS patients is not the cause of the disease, it’s a symptom of some much deeper ill. Though the following analogy may be a bit of a stretch, treating MS by suppressing the immune system is like treating a broken leg with painkillers. It may make the patient feel better, but it doesn’t do a damned thing towards fixing the underlying problem.

At this point, you might rightfully ask, so, Mr. Smarty-Pants, if you’re so clever and smug and full of yourself, where would you suggest we start this quest for an MS cure? Well, I’m glad you asked. Even though I’m not a physician or researcher, I think I have a few good ideas. Here are just some of them:

• We’ve known for years that the Epstein-Barr virus is somehow implicated in the MS disease process. In fact, there seems to be such a close relationship between EBV and MS that some researchers have gone so far as to state that if a person doesn’t have EBV, they don’t have MS (click here). Certainly, EBV alone doesn’t cause MS, but in conjunction with specific genetic predispositions, it may just be the fire starter. We now have the ability to map patients’ genomes, so shouldn’t there be at least a few researchers laser-focused on understanding the interaction between EBV and patient genetic profiles in an attempt to get to the guts of the problem? At the very least, a comprehensive database of the genetics of MS patients should be started posthaste so that gene variants and epigenetic changes can be detected and identified.

• It’s been observed that HIV patients taking powerful antiretroviral drugs seem to develop MS in far lesser numbers than the general population (click here) and that HIV patients who already have MS often see their disease go into nearly complete remission once starting these drugs (click here). Again, why isn’t this a subject for intense scrutiny? Especially since one of the most commonly used anti-HIV drugs, AZT, has been shown to have anti-EBV properties (click here)? Please note, there was one trial of an anti-HIV drug, Raltegravir, on MS patients. This trial failed, but Raltegravir does not effect EBV.

• HSCT, the form of stem cell therapy that first eradicates an MS patient’s immune system with strong chemotherapy drugs and then reboots it via stem cell transplant has been shown to put properly selected multiple sclerosis patients into long-term remission (click here). Shouldn’t these patients be carefully tracked and tested to see just why this treatment can be so incredibly effective? Is it simply that their reconstituted immune systems are no longer autoreactive, or might there be some other reason? Does HSCT not only put MS into remission but actually cure it, with those patients who see a resumption in disease activity somehow developing MS anew after coming into contact with some environmental trigger? The fact is that Epstein-Barr virus, when dormant, resides in immune system B cells which are wiped out during the chemotherapy-induced eradication of patient’s immune systems at the start of the HSCT process. This means HSCT rids the body of EBV. Does this allow the genetic triggers of the disease to then reset, putting a halt to the autoimmune process? A shot in the dark, maybe, but one worth examining…
  
  
• Researchers at Harvard are currently studying the use of a century-old tuberculosis vaccine, called the BCG vaccine, to treat patients with type I diabetes, an autoimmune disease. They are reporting remarkable success, completely reversing the disease in some patients (click here). Apparently, the BCG vaccine works on both the immune system and on the genetic level, and thus could theoretically be of use not only in type I diabetes but across a broad spectrum of so-called autoimmune diseases. In fact, before the introduction of the MS disease-modifying drugs, there was promising research into the use of BCG to treat MS (click here), which seems to have been abandoned once money started rolling in from the first MS drugs. Why devote research monies to a 100-year-old vaccine that costs relative pennies when gazillions of dollars can be generated developing a never-ending stream of boutique drugs that profoundly alter the workings of the human immune system, the long-term ramifications of which are entirely unknown? As Deep Throat told Woodward and Bernstein, follow the money…

Okay, in the parlance of corporate speak, I’ve just spitballed a few ideas on which MS researchers devoted to finding a cure for the disease might focus their considerable brainpower. Of course, many of these ideas don’t have near-term blockbuster profit potential, so in the upside down world of pharmaceutical company driven medical research, they likely won’t get much attention. I’ve said it before, and I’ll say it again – capitalism is a wonderful system for creating wealth, but the marriage of capitalism and medicine is proving to be an unholy one. As long as profits take precedence over patients, as is currently the case, cures for any diseases will be rare beasts indeed.

MS organizations should never lose sight of the fact that their prime directive should be hastening their own demise by contributing to the effort to find a cure for the disease. The current status quo must not stand, and patients should not stand for it. I for one will not shut up about this topic, no matter how nuts it may make me seem to those less inclined to histrionics. If MS patients themselves don’t demand better, we will never get better, both figuratively and literally.

Oh, yeah, Happy Holidays!

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Since it is the season of giving, please allow me to recommend two MS nonprofits that are very worthy of your and your families’ and friends’ donations. I’m not suggesting the National Multiple Sclerosis Society, as, quite frankly, they have a vast contribution generating machine that sucks up lots of the cash that might be better directed at smaller MS organizations. Given the topic of this essay, I’m recommending two groups that are striving to find a cure for multiple sclerosis.

The first is the Tisch Multiple Sclerosis Research Center of New York (click here), which is currently in the process of building the largest stem cell laboratory devoted strictly to stem cells for MS, and will soon be starting the only FDA approved phase 2 stem cell trial on PwMS. In addition, the Tisch Center is involved in a wide range of groundbreaking research, from identifying MS biomarkers to understanding the root cause or causes of the disease, without an understanding of which there can be no cure.

My second pick is the Accelerated Cure Project (click here). The ACP is currently focused on the iConquerMS project, a crowdsourced database of information supplied by MS patients that will give researchers worldwide the opportunity to detect patterns and trends in the MS population that very well could provide the clues needed to come up with a cure for the disease. In addition to donating to the ACP, if you’re not already a participant in the iConquerMS project, I urge you to visit their website (click here) and start participating by answering some quick surveys. This is a patient-driven research effort and gives you a chance to join in the search for a cure.

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Finally, here’s a little Christmas present to my dear readers. The following clips are from the exquisite but little-known 1995 film “Smoke”, one of my faves.. Despite the fact that there are no explosions or car crashes, this one of my favorite scenes in all of filmdom, just one friend telling another a compelling Christmas story. Is the story true or made up, and does it matter? The scene features a masterful performance by the great Harvey Keitel playing opposite William Hurt, and touches on just about everything that makes Christmas and human beings such endlessly fascinating subjects.

Please watch both clips to get the full effect (I recommend viewing full-screen), as I couldn’t find a single clip that encompasses the entire sequence. As an added bonus, the sequence finale features one of my favorite Tom Waits songs, Innocent When You Dream. If you’re interested in watching Smoke in its entirety, it’s available for streaming on Amazon (click here). Enjoy!

Happy No-Thanksgiving!

Well, this year I’m in no mood for Thanksgiving. Quite frankly, the state of my life, health, and the world in general has me feeling grumpier than a starving vegan in a steakhouse. Between being increasingly decimated by a progressively crippling disease, forced to witness a nation and a planet gone mad and suffering through the worst fantasy football season I’ve had in over a decade, I find myself more inclined this year to say “no thanks” than “thanks.” So, I’ve decided to invent my own little holiday: No-Thanksgiving, a day when one can feel free to share their disdain and disgust with freedom and pride.

No-Thanksgiving coincides precisely with Thanksgiving, so those who find themselves forced this Thursday to sit around a table of people gushing with gratitude while feeling only varying shades of repulsion are hereby granted license to let loose with a bile laced torrent of grievances when it comes your turn to speak. You’ll feel a whole lot better, and you can tell the others at the table – as they look at you horrified in slack-jawed bewilderment – to pull up their big boy pants and just carve the freaking bird. And then you must swallow some air and unceremoniously burp out a hearty “Happy No-Thanksgiving!”. A burped “Happy No-Thanksgiving” is the only mandatory ritual required of those celebrating this new holiday.

So, what am I especially not thankful for this year? Oh, let the litany begin…

I am aghast at the list of famous and powerful men who have proved to be harassers and sexual abusers of women, a register that seems to grow daily like an ignored melanoma. Granted, some of the grievances committed are worse than others – in my mind, there is a world of difference between cupping someone’s butt and sexually touching a 14-year-old – but none can be considered acceptable behavior. These ongoing revelations have led me to ponder questions I never imagined I’d formulate, such as how much satisfaction can there be in forcing somebody to watch you masturbate? Back when I was healthy and single, the thrill of finding a new partner lay largely in the fact that she actually liked me. When introduced to a beautiful woman I never once had the slightest urge to corner her in a private space with the intent of forcing her to watch me pull out my Wee Willie Banjo and start strumming a tune. Definitely not my idea of making beautiful music together. The fact that women subjected to such spectacle didn’t immediately projectile vomit on the men in question is testament to the strength of the female gender. A pox on all of these degenerates, along with an especially nauseated “no thank you.”

I am horror-struck at the destructive power of my disease, which knows no bounds and defies any attempts to arrest it. This thing is Godzilla, and my life is Tokyo. It doesn’t help that during the last few months I’ve been hit with a series of flu bugs and other viruses, which are to multiple sclerosis as fine hooch is to a recovering alcoholic clinging to the edge of the wagon. The frightening thing about my getting sick with any kind of bug is that the resulting physical carnage always proves to be a preview of things to come in the not-too-distant future of my disease’s relentless progression. I’ve often surprised myself and others with my stoicism in the face of hurricane MS, but I must admit there have been moments these last few months that have left me scared shitless. Not being able to get myself in or out of bed, control my bladder, or summon up the strength to push a fork through a piece of broccoli are not exactly harbingers of a rosy future. Note to my doctors or any other doctors who happen to be out there: help! And to my disease: an emphatic no thank you!

I am driven to distraction – literally, I can’t sleep – over the abominable tax plan being rammed down the throats of the American people by Congress. I’ve always tried to keep politics off of these pages, but not speaking out against the abhorrent is the worst kind of cowardice. And these tax proposals, as currently constituted, are most certainly abhorrent. Putting aside the fact that they are yet another attempt at supply-side economics, a theory which has never, ever proven successful whenever it’s been implemented – “But, but, Reagan!” I can hear some sputtering, conveniently forgetting that President Reagan raised taxes 11 times after he initially cut them (click here) – what is really unsettling me is the fact that by all objective estimates the current tax proposals will increase the federal deficit by between $1 trillion and $2 trillion (click here, here, and here). This very likely will trigger mandatory cuts to Medicare (click here), and I fear will eventually be used as an excuse for yet another misguided push to privatize Social Security, Medicare, and Medicaid. The combined effects of these changes would leave millions of the most vulnerable Americans – the elderly, chronically ill, and disabled – without the social safety net they so desperately need. There is no doubt that the US is in need of tax reform, and getting through the process will always be as pleasant as a national root canal, but the hyper-partisan tax proposals now on the table should be anathema to all reasonable Americans. So, with all the strength I can muster, I shout “no thanks” to the current version of tax reform. If you agree, call your Representatives and Senators at (202) 224-3121.

I am a horribly disillusioned by modern medicine as it is currently practiced, rife with conflicts of interest and cynical calculations that put profits over people. Due to the explosive growth in the cost and profitability of pharmaceutical drugs, it seems the goal of modern medicine has become treating rather than curing, a model which is great for Big Pharma but sucks elephants for those of us saddled with horrible diseases. The eye-popping amounts of money generated by drugs that treat but don’t cure have insidiously transformed the landscape of medicine from top to bottom. The medical journals, increasingly reliant on Big Pharma monies for their survival, predominantly publish studies favorable to pharmaceutical company interests. These studies are usually conducted by researchers who are on the payroll of the companies whose drugs they are studying. The doctors reading these published studies are in turn very often paid handsomely in the form of shady speaking and consulting fees by the very pharmaceutical companies whose products they prescribe. In any other industry people would go to jail for this kind of crap, but in medicine, where they can perhaps do the most harm, these practices are now considered business as usual. For an insightful article on just how pernicious these shenanigans can be, (click here). So, come this Thursday’s No-Thanksgiving I will include the entire medical establishment high on my list of no thank you’s…

I’ll end my list here due to time constraints, though in my current state of disgruntlement I could easily extend it ad infinitum. No-Thanksgiving day will soon be upon us, and it wouldn’t make much sense to publish this article once the day has passed. I’d ask all who wish to join me in celebrating this new holiday to refrain from throwing a drumstick at your idiot uncle and instead help to grow the popularity of No-Thanksgiving day by providing a list of your own candidates for “no thank you’s” in the comments section of this essay. Come on, give voice to all of your pent-up grievances, grudges, and gripes so that all of your fellow MS curmudgeons can revel in your misanthropic meanderings!

To all my wonderful Wheelchair Kamikaze readers, I wish you a tremendously Happy No-Thanksgiving! And a Happy Thanksgiving to the more well-adjusted among us…

WK Honored – And You Can Get A Free Comprehensive Health Panel Test!

I’m pleased to announce that Wheelchair Kamikaze has been named one of Healthlabs.com’s top 25 MS blogs (click here). WK nabbed the fifth spot on the list, just behind the blogs of such huge organizations as the National Multiple Sclerosis Society, the UK’s MS Society, and the Multiple Sclerosis Association of America. While this is a tremendous honor, the best part is that Healthlabs.com is offering all US-based Wheelchair Kamikaze readers a free Comprehensive Health Panel, including blood tests and urinalysis.

Wheelchair Kamikaze has achieved success beyond anything I ever could’ve dreamed when I started these pages back in 2009. I honestly never expected more than a few dozen people to ever give this blog a gander. Now, nearly 9 years later, WK is approaching 3 million page views. Amazing. Heartfelt thanks to all Wheelchair Kamikaze readers, and of course to Healthlabs.com.

Tremendous congrats go to all the other blogs that Healthlabs’ list. Each selected blog is high-quality, entertaining, and informative, and I urge you to check each of them (click here). Healthlabs.com has provided very informative synopses of each, so their list of chosen blogs is a valuable resource in and of itself.

Now, for the really good stuff –  Healthlabs.com is generously offering free comprehensive health test panels (a $99 value – click here) to all US-based Wheelchair Kamikaze readers. This health test panel includes blood tests for lipids (cholesterol levels), a comprehensive metabolic panel, iron and total iron binding capacity tests, a thyroid panel, and a complete blood count (CBC), as well as a urinalysis.

If interested, please use the following instructions for accessing your free Comprehensive Health Test Panel:

1. Wheelchair Kamikaze readers can place their orders over the phone by calling 1-800-579-3914 . Please mention that you are calling about the free Comprehensive Health Test Panel for Wheelchair Kamikaze readers.

2. Healthlabs.com’s certified health care specialists will order a Comprehensive Health Test Panel for you free of charge over the phone.

3. Once the test is ordered, readers can simply use the lab nearest them. Healthlabs.com has a partnership with Quest Diagnostics, so users can get tested at any of 2,000 labs across the United States. Most labs are open during regular business hours, and no appointment is necessary. Readers can use Healthlabs.com’s "Find a Lab" tool (click here) to find the lab nearest them.

4. Results are delivered by email in 1-2 business days.

This offer expires on November 1, 2018.

I’d asked anybody taking advantage of this offer to please leave a few words about their experience in the comments section of this post. I’d like to keep track of how well the process goes.

Once again, a big thank you to Healthlabs.com and to all the readers that have made Wheelchair Kamikaze a popular part of the MS Internet. I’m humbled to have been able to be of service through the years to my fellow members of the MS club, one which none of us ever wanted to join. You’ve all given me some method to the madness of my experience with this disease. For that, I will forever be grateful.

Navigating the MS Internet: Useful Websites and Some Words of Caution

Back when I was first diagnosed in 2003, the Internet was a far different place. Facebook and Twitter had yet to be invented, and Apple’s first iPhone was still four years away. As a newly minted MSer, I plunged headlong into what now seems like a relatively barren virtual landscape seeking information about the disease and interaction with other patients dealing with it. I found some MS web forums (often called bulletin boards back then), and a handful of MS themed blogs, along with some general medical information sites that made some mention of multiple sclerosis.

Flash forward 14+ years, and, my, what a difference. For better or worse, Facebook has become the giant elephant in the room, the amount of MS blogs has exploded, and informational resources are plentiful. What follows is what I hope will be a handy-dandy guide to getting the most out of the modern MS Internet, along with some cautionary words about some of the dodgy information (or misinformation) that is now so easy to come across.

For those like me, hungering for the latest and greatest in MS news, it’s much easier to have such tidbits find you rather than you find them. How to achieve such Internet wizardry? Easy, just sign up for news alerts and daily newsletters from any number of reliable MS sites. One of the most effective ways of having a wide variety of MS news – from puff pieces to hard research – delivered straight to your email inbox is to sign up for Google news alerts (click here). I have my alerts set up to flag any news items including the words “multiple sclerosis,” and I get a daily email compilation of MS-related articles from around the world delivered directly to me courtesy the Google Internet mystics. Easy peasy lemon squeezy.

Other sites that provide reliable MS information and allow you to sign up for email newsletters include Multiple Sclerosis News Today (click here), and MS Views and News (click here). For those who enjoy a deep dive into the latest MS research, there’s The MS Research Blog (click here), which is published by the MS neurologists and researchers at the Barts and London medical school in Great Britain. Simply sign up in the “Follow By Email” space provided on the blog, and you’ll get their posts right to you on a daily basis.

Other sites that provide a wealth of MS info and resources include: the National Multiple Sclerosis Society (click here), the Multiple Sclerosis Association of America (which provides not only info but material help for those MSers in financial need – click here), the MS international Federation (click here), Healthline.com (click here), and ActiveMSers (provides info and motivation about staying physically and intellectually active despite having MS – click here).

For those seeking interaction with other MSers, there are a wide variety of online MS communities that offer excellent venues for information sharing and patient to patient camaraderie. Most of these are moderated by folks with medical backgrounds, and they don’t discourage posts from people with differing viewpoints, unlike many of the dedicated MS groups on Facebook – but more on that later. Among the oldest of these online communities is the venerable MSWorld (click here), which was one of the first MS forums I discovered over 14 years ago when I was first diagnosed. The site has become much more multifaceted in the intervening years, and I’d encourage all patients to give it the once over twice. Other vibrant online MS communities include Shift.ms (click here), the NMSS’s MS Connections (click here), and My Counterpane (click here), a unique MS community that encourages members to track their moods, post videos, and provides fodder for thought and conversation. ThisIsMS is another older forum that is a great place to discuss MS research and treatment protocols, as well as general MS topics (click here). The British MS Society’s forums are another welcoming venue (click here).

For those looking for an MS-specific social networking app for smartphones and tablets, there’s Healthline’s MS Buddy (Android-click here, Apple-click here), which will match you up with a different fellow MSer every day, with whom you can chat, exchange experiences and information, and hopefully become friends. Healthline is currently in the process of expanding the features of the app, and it’s well worth the download.

iConquerMS (click here) allows MS patients to participate in a crowdsourcing research project. By answering a series of surveys, patients contribute to a vast database of MS related information that can be tapped by MS researchers worldwide. This is an extremely important initiative, and the site offers benefits to those who participate. I strongly urge all Wheelchair Kamikaze readers to become members of the iConquerMS community.

Back when I started Wheelchair Kamikaze in 2009, there were already quite a few MS blogs taking their place in the blogosphere (without doubt one of the ugliest words in the English language), but now there are so many it’s almost impossible to keep up. Happily, the site MultipleSclerosis.net (click here) features articles by many popular MS Bloggers and writers, yours truly included. You’ll find a wide variety of articles and info on MS.net, from the latest MS research to highly personal essays, all written by patients with MS or their caregivers. Honestly, this site is a must read and can keep you busy for hours each day.

Okay, now let’s discuss Facebook, that multi-tentacled entity intent on world domination that for many people is the Internet. As you may have guessed, I’m not a big fan of Facebook, for a plethora of reasons. Of course, I do understand Facebook’s appeal and its value as a place for keeping in touch with old friends and meeting new ones, engaging in social tribalism, reveling in confirmation bias, reading totally fictitious news items presented as fact, and taking online personality tests. BTW, I’m an ultra-intuitive old soul super genius with an encyclopedic knowledge of art, history, geography, literature, science, grammar, vocabulary, and spellling. Also, my spirit animal is the Australian Pimple Beast and the color of my aura is purple. Oh, and Judge Judy is my celebrity soulmate.

When it comes to multiple sclerosis, though, my real beef with Facebook is the insane amount of misinformation, disinformation, and hyperbole that gets passed around as fact in many if not most MS Facebook groups, particularly those devoted to one treatment protocol or another. This is especially true in groups dedicated to treatments that are considered alternative, such as HSCT, CCSVI, the Coimbra protocol, etc. I don’t mean to disparage any of these treatments, as I believe it’s vitally important to keep an open mind when it comes to new and different MS treatment approaches. I am in fact a big proponent of HSCT, for properly selected patients, and have written extensively on the subject (click here).

The problem with much of the MS info on Facebook lies predominantly in the fact that most if not all of the treatment related FB groups are founded and moderated by folks who believe in their chosen treatments with an evangelical zeal, or, more nefariously, by organizations offering such treatments for mucho dinero. Quite often, the keepers of these groups don’t countenance any sort of dissenting viewpoint or set of facts that don’t jibe with the party line, and actively discourage or even ban those with the temerity to point out glaring errors in fact and reason.

I recently had an email discussion with Dave Bexfield, an MS Activist who maintains the ActiveMSers website, about the problems we’ve both encountered trying to inject some sort of objectivity into these groups. His experiences closely mirror mine, with the added dimension that Dave has undergone HSCT treatment himself. He offered the following account of his experience trying to tell his story on some of the HSCT Facebook groups. I’m sharing Dave’s words with his permission:

“Sadly, it's virtually impossible to counter MS misinformation on Facebook, and HSCT—a treatment that saved my life in 2010, but ultimately did not stop the progression of my disease – is a perfect example. Rational, balanced discussions are drowned out by cheerleaders armed with "facts" that are little more than personal opinion. It's gotten so bad that MS researchers have complained to me personally that while some of the info on these fan sites is correct and informative, as much as a third is just wrong, outdated or even fabricated. What to do? I've finally stopped trying to correct people on social media to avoid the inevitable flame wars. It was unpleasant wearing the "black hat" of truth and playing the role of a human piñata.”

For those interested in learning more about Dave’s experience with HSCT, shift.MS has published a series of short video interviews with him on the subject (click here). Highly recommended viewing for anybody investigating this form of treatment.

Suffice it to say, my experiences with a variety of Facebook treatment groups are quite similar to those of Dave’s. My best advice would be that if you find yourself on a treatment themed Facebook group and see nothing but glowing anecdotal reports and only “facts” that back up these claims, colossal alarm bells should go off in your head. It’s vitally important that you actively seek alternative viewpoints to get a complete picture of whatever treatment you are investigating. Facebook may be a good starting point but should most certainly not be your only source of MS information, or any information for that matter. Always remember, you can learn much more from people you don’t agree with than from those you do. And that goes for all aspects of life, not just medicine.

As far as Facebook’s general MS support groups are concerned, they’re much better than groups purporting to dispense reliable medical info. Still, for support and camaraderie, I personally prefer some of the online MS communities listed above.

I hope WK readers find this roadmap to the MS Internet useful. If I’ve missed any sites that are your personal favorites, please let me know about them in the comments section of this post.

As is my predilection, I’ll leave you with a little musical ditty reflecting my feelings on much of the medical info that can be found on Facebook: “Beware,” by the great Louis Jordan. Yes, some of the sentiments expressed in the lyrics are archaic, but remember, the song was written over 60 years ago and was just meant to be fun. This is a classic example of the “Jump” genre of music, sometimes also called “Stomp,” which was a direct precursor to early rock ‘n’ roll…

Me, Myself, and MS

(The Multiple Sclerosis Association of America asked me to write a guest post for their blog, MS Conversations, on the subject of MS and relationships. This is the essay I wrote for them. Please check out the MSAA's website (click here) which offers a wealth of info on all aspects of the disease, and material and financial help to MS patients in need.  Also visit their blog, which features posts from many different writers (click here). The MSAA is a terrific organization, and I hope you'll take some time to get to know them.)

Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”

Among the countless aspects of life impacted by the MS are relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.

Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being. 

Nothing defines the notion of mortality more sharply than being diagnosed with a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.

For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche. 

When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs for the illumination of self-awareness. As the Persian poet Rumi wrote, the wound is where the light enters.

MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those adornments often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world?

I discovered facets of my personality that had been long neglected, and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.

Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns and rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within.

Transabled

An able-bodied friend and I recently discussed the swirl of issues surrounding transgender people, spurred by the President’s sudden tweeted edict banning transgender volunteers from serving in the military. My friend expressed mixed thoughts on these matters, most of them based on the fact he just couldn’t identify with a person feeling they were somehow born into a body of the wrong sex. I replied that I too couldn’t entirely relate to the emotional state and cultural pain experienced by transgender folks, but my feelings should have no bearing on issues of fairness and equality. If all people are indeed created equal, any person's standing as an equal should not rely on my ability to fully grasp the intricacies of their circumstances.

As those thoughts turned into words and left my lips, the realization hit that in many respects I can identify with at least some of the feelings I expect transgender people experience. I’m in no way equating my own situation with theirs, but thanks to Creeping Paralysis the inner me is now almost entirely divorced from the body in which it exists. I’m not transgender, but I am transabled.

My concept of “me” is still that of the wiry six-footer that I used to be, the mannish boy who reveled in meandering strolls through the city, long-distance swims, a vibrant social life, and a full tapestry of sensual and tactile delights. The self I hold dear bears no relation to the embodiment of decrepitude that confronts me whenever I glance down and take a gander at the frame that sits in my wheelchair. The image staring back at me when I muster up the courage to roll up to a full-length mirror and take a peek is a complete stranger, at least from the neck down. With its bloated belly and ravaged limbs, that thing in the chair is most emphatically not the me that dwells inside of it. The old me lives on, cocooned in my heart and soul, trapped within a penitentiary of increasingly useless flesh and bone.

Though I try my best to quiet the frenzied feelings engendered by this gaping disconnect between body and spirit, at times there is simply no denying the emotional tempest raging within. Confusion, anguish, sadness, a gnawing yearning for what used to be – negative energies all, especially when directed inward. And though I try my best to silence or at least contain them, these destructive emotions seek out seams and points of weakness through which to burst, like grasping fingers of flame blasting through an apartment building window, threatening a conflagration that will take down the entire edifice. Thus far my attempts at emotional alchemy, seeking to turn negative energy into positive, have helped neutralize the threat, but the potential for self-immolation always lurks within.

As a transabled person, I often find myself an alien on my own planet, a victim of a variety of discriminations. Outside the cozy confines of my home, there are bathrooms I can’t use, restaurants and shops that apparently don’t want me as a customer, and passersby to whom I appear to be invisible. Indeed, maybe even something worse than invisible, a threat, a reminder of the ephemeral nature of their own sense of normalcy, a not-so-subtle hint that the supposedly solid foundations of their lives are in fact made of nothing more than gossamer.

The New Testament warns us to judge not, lest ye be judged. As members of a society increasingly riven by social and political divides – largely manufactured by would be puppet masters who seek to gain wealth and power by exploiting the very fissures they have created – it should be contingent upon every individual to live those words as a matter of personal and national survival. It’s far past time to reject outright the prefabricated outrage bombarding us and not fall prey to manipulators who have nobody’s good at heart but their own. We are all in this together, black or white, gay or straight, abled or transabled. If we allow the cracks in our society to further widen, we may all too soon find out what lies at the bottom of the abyss.

To my fellow transabled people I can only offer the same advice that I try to follow myself; make every effort to channel the despair and outrage you feel over being trapped in an increasingly unrecognizable body into some sort of positive force. As the great Johnny Lydon stated, anger is an energy. For your sake and the sake of your transabled brethren, make every effort to direct that energy outward, to vent it in some sort of constructive way if only to not let it combust within you. Cry out against a multiple sclerosis status quo that has made treating but not curing somehow acceptable, confront a medical industry that obscenely sees us first not as patients but as consumers, and offer comfort and understanding to those similarly afflicted.

To the transgender community, I tender my support, as somebody who is now experiencing the turmoil of being transabled. Although we may not live in the same house, I believe we might reside in the same neighborhood. I didn’t choose my circumstances and neither did you. Stay strong.

Celebration-Elizabeth Jameson
Created from MRA image of my brain.

My dear friend Elizabeth Jameson (click here), a disabled person who is far more comfortable with her imperfect body than I am with mine, recently gave the below Tedx talk. Her words and deeds perfectly illustrate the power of directing potentially negative energy outward, thereby forcing it into becoming something positive. Elizabeth’s MS journey found her turned into an accidental artist, transforming MRI images into thought-provoking pieces of fine art. My brain had the honor of being one of her subjects, and the prints she created out of my MRIs reveal that I have a couple of dancers jitterbugging away inside my skull. Thanks to Elizabeth, images of my brain have appeared on the covers of medical journals (click here) and textbooks (click here). Though MS has now rendered her quadriplegic, Elizabeth’s radiant spirit and message of everlasting hope come through loud and clear in this riveting and important talk. Enjoy…

(For those receiving this via email, you can view this video on the Wheelchair Kamikaze website – click here)

Hunger Games: Back on the Chuck Wagon

I finished this month’s round of the Fasting Mimicking Diet (FMD) last Friday. This time around, in addition to the five-day prepackaged Prolon diet (click here), I added an extra two days of my own design. I once again found the five day FMD to be surprisingly easy to complete. As was the case last month, the third day on the diet was the hardest but even that wasn’t too terrible, just some hunger pangs and a few wistful thoughts of key lime pie. By the fourth day, though, any feelings of hunger had subsided, and days four and five were a breeze.

Since things went so well over the prescribed five days, I went ahead with my plans to push the boundaries and extend the length of the Fasting Mimicking Diet with an additional two days of even more draconian dieting. On day six I ate about 25 olives over the course of the day, and drank water and a glycerol based energy drink that’s supplied with the Prolon diet. Because Prolon’s glycerol concoction is mixed with water in amounts depending on the dieter’s weight, I had plenty left over from the previous five days to make up a few more batches for my extended version of the diet. One day’s worth of energy drink supplies about 100 calories, and 25 olives provides another 100, so on day six I consumed a total of roughly 200 calories.

On day seven I decided to go liquid only, and confined my intake to water and the energy drink. Even so, I felt absolutely no hunger, and the day was actually kind of anticlimactic. Don’t know what I was expecting, but after six days of extremely reduced caloric intake, adding a seventh during which I consumed only 100 calories presented no problems whatsoever. I wasn’t very active, but then again being stuck in a wheelchair doesn’t make for a very physically active lifestyle. Even if I were to drive my wheelchair 10 miles, the effort only requires a modicum of pressure from my left arm and hand. Not exactly a high calorie burning activity, thus the presence of the bowling ball I seem to be concealing under my shirt.

Speaking of which, over the course of the seven days I lost about 5 pounds, which is exactly what I lost during last month’s five day FMD. I expected to lose more weight given the extra two days of fasting, but for whatever reason my bowling ball seems loath to shrink. I may have to resort to hammer and chisel.

I broke my fast on day eight with a cheese omelette and a bagel and butter, thinking these items fairly easy to digest. Apparently, my body had other ideas, and about 20 minutes after finishing my meal I was hit with a giant wave of fatigue that forced me to bed, where I crashed for a solid four hours of deep, deep sleep. I suppose after seven days of hardly having to devote any energy at all to digestion, suddenly being confronted with an omelette and bagel gave my body quite the shock, and my “awake” circuit breakers were slammed off in order to muster up the oomph to deal with the introduction of some solid food. Dairy and wheat (gluten) might also have presented my body with some problems other foods wouldn't have, but I've never had a problem digesting either. In any event, lesson learned, I’ll break next month’s fast with a simple fruit salad.

As for any changes in my disease state, I think it’s still too early to tell. I did have blood tests taken after day five of this month’s FMD, so we’ll see if they show any discernible signs of changes in my body chemistry. At this point I plan on doing the diet for at least two more cycles, tinkering with the formula in consultation with my naturopath.

Oh, I did reach out to Prolon about discounting their diet kit for patients with chronic illnesses. I was told to send an email to the CEO, which I did but so far have received no response. I’ll try again in a week or so and keep everyone posted if I make any progress in this regard…

The Hunger Games: Starved To Life

In keeping with my last post, I figured I'd give the title of this post a little cinematic touch.

Today (Saturday, June 24) I'm starting another round of the Fasting Mimicking Diet that I did last month. For those who missed  last month’s hoopla, I wrote posts recounting each of the five days of the diet, starting with a comprehensive explanation of how’s and why’s of the plan which you can read by (clicking here).

I’ll be using the same prefab diet marketed by Prolon (click here). A few people asked if I’m being sponsored by Prolon, and I promise you, I am not. I understand that the price of the diet kit is prohibitive for a lot of people, and I plan on getting in touch with the company and seeing if we can work out some kind of deal to make the kits more affordable for people with MS who want to try the diet but find the price too steep. Seems like it would make for good publicity for the company and be of benefit to many patients, a classic win-win situation. Meant to do that earlier this month, but, as usual, the days somehow got away from me.

Just a quick recap of what the diet entails: this is a strict reduced calorie diet, done in the hope (expectation?) that forcing the body into a fasting state will allow it to recalibrate some of the out of whack processes seen in diseases like MS, reduce inflammation, and jumpstart the body’s own stem cells to do some regeneration of damaged tissues. On day one of the diet consumption is restricted to 1150 calories. On days 2-5, this is cut further to 800 calories. The diet consists of prepackaged high nutrient soups, protein bars, kale crackers, olives, and a glycerol based energy drink. Other liquid intake is restricted to herbal teas and water. All of the food provided is vegetable-based.

Last time around I found getting through the five days surprisingly easy, and instead of feeling weak at the end of the diet, as I expected, I actually felt quite energized. So, this time around I’m going to take an even more draconian approach and try to extend the diet by two days, consuming only the energy drink, water, and herbal tea on days six and seven. I am doing this under medical supervision, and, rest assured, if I find that things aren’t going well during those extra two days, I’ll pull the ripcord and eat a fruit salad. But desperate times call for desperate measures, and my Creeping Paralysis isn’t showing any signs of relenting.

I was inspired to extend the diet after reading a 2012 article from Harper's, which recounts the long history of fasting for medicinal purposes and tells the tale of the author’s own successful 19 day fast. Incredible stuff. You can read the article by (clicking here). I plan on engaging in at least one more round of the diet after this month, probably more. My naturopath said she’s seen patients start to respond after the second round. Here’s to hoping. I didn't see any additional benefit from the first round other than some lost weight (5 pounds) and a temporary increase in energy levels, but for whatever reason I have found the idea of eating red meat absolutely revolting since doing the diet last month. Go figure.

For those foodies out there, I chose as my last meal before starting this month’s diet a very yummy Thai dish, crispy duck in red curry sauce with lots of pineapple, lychee nuts, and veggies. One of the great things about living in NYC is that you can get pretty much any type of cuisine delivered right to your door, and the aforementioned deliciousness arrived about 25 minutes after we placed the order online. The wonders of modern technology.

I’ll not recount every day of this month’s diet as I did last month, but I'll check in again when this cycle is over. Hopefully, I’ll make it through the entire seven days.

Here’s mud in your eye…

Some Wheelchair Kamikaze Movie Recommendations

And now for something completely different… I’ve been hard at work on an MS related article for an online general media outlet, which when finished will also eventually appear on this blog. I was hoping to have the piece done at least a week ago, but I’m finding it difficult to write for a general audience after so long writing specifically for people with direct knowledge of MS. This hurdle combined with the usual Creeping Paralysis crap (weakness, paralysis, fatigue, etc.) have combined to make writing the article something of a tough slog. No worries, though, I’ll get it done, and hopefully the editors of the internet site will find it to their liking. 

In the meantime, I don’t want to leave WK readers feeling abandoned. As my mind is filled with MS related flotsam and jetsam as a result of working so hard on the aforementioned article, I figured I’d go in a completely different direction for this blog post. How about some movie recommendations for others like me who find themselves with lots of time to stare at TV screens due to the vagaries and vulgarities of multiple sclerosis?

Here, then, are a few lesser-known films that I hope you might check out and find enjoyable/interesting. If any of you have already seen any of these films or watch them as a result of these recommendations, I’d love to know your thoughts about them. Please feel free to leave your own critiques in the comments section, below.

The Drop – This was James Gandolfini’s last film before his untimely death. It’s a modern film noir, centered on a Brooklyn bar that is used by underworld figures as a “drop” for their ill-gotten gains. Though there are a few action sequences, this is more a nuanced character study of the central players, who may or may not be the people we assume them to be when first we meet them. Kind of like life, no? The film features a tremendous performance by Tom Hardy, who I think is one of the finest actors of his generation. Gandolfini also gives a fine performance in his last screen appearance. Fans of The Sopranos – and others who like their films a bit dark and complex, like a zinfandel – should definitely give this one a look.

Paterson – A lovely, quirky film by director Jim Jarmusch, which focuses on the power and beauty of the little things in life; a box of matches, conversations overheard, the simple but simultaneously complex emotional dance that is love itself. The picture gives us a peek into the lives of a bus driver/poet (Adam Driver), his wife (Golshifteh Farahani ), and some of the characters who populate their neighborhood in Paterson, New Jersey. Filled with wonderful poetry (both visual and literary) and an affection for the small details that often go unnoticed, this is a gem that will leave you smiling and thinking about its many facets for quite a while after viewing.

20^th Century Women – A kind of coming-of-age story of not only an adolescent boy, but also of the Bohemian adults who surround him. Set in Southern California circa 1979, a period at the precipice of the great social changes that would unfold in the coming decades (the rise of Reaganism, the Internet, the computerization of everything), 20^th Century Women involves the lives of a teenage boy (Lucas Jade Zumann ) and his mother (Annette Benning), who share a house with several unconventional housemates. Elle Fanning stands out as the young man’s best friend/love interest, and the film hits all the right notes in regards to the time period, the complexities of personality, and the subtle – and sometimes not-so-subtle – emotional skirmishes of both adolescence and adulthood.

Hunt For the Wildepeople – a fun and funny film from New Zealand about a troublesome teenage boy (Julian Dennison) and a gruff older man (Sam Neill) who inadvertently find themselves the subjects of a national manhunt through the wilds of New Zealand’s outback. A witty script, endearing characters, and the natural beauty of New Zealand combine to make this sometimes silly, sometimes seriocomic film a deliciously diverting watch, one with a few laugh out loud moments, some over-the-top action sequences, and lots of heart. Not a film that reaches for profundity, but if you’re looking for some offbeat entertainment, Hunt For The Wildepeople will fit the bill nicely.

Green Room – I’m a big fan of horror films, but not the kind that feature ghosts, demons, or other supernatural creatures. Human beings can be horrific enough. Green Room finds a young punk rock band on tour in their dilapidated van far away from home, with money and patience running desperately short. The band inadvertently picks up a gig at a Nazi skinhead club, where they stumble upon a murder. Let’s just say the things go downhill from there. Patrick Stewart is terrific as the elder patron and leader of the skinhead crew, and the film is packed with tension, anxiety, and plenty of adrenaline inducing moments. I classify this as more of a thriller than a pure horror flick, though it does contain some gore. Definitely recommended for fans of the genre.

Irreversible – perhaps the finest product to come out of the “French Extreme” movement, 2002’s Irreversible is an unforgettable film that is definitely NOT for everybody. Over the last few decades the French have stretched the boundaries of the horror/thriller genre, with a number of films that leave nothing to the imagination but also, at their best, plumb the depths of the human experience. Irreversible depicts the events of one extremely tragic night in Paris, in reverse chronological order. In other words, the film starts with the ending credits, and the night’s sequence of events plays out backwards, last to first. Each sequence of the film is shot as a single take with no cuts, and the camera work by director Gaspar Noé is as spectacular as it is unsettling. A terrific cast (Monica Bellucci, Vincent Cassel, Albert Dupontel) thoroughly inhabit the film’s largely ad-libbed script and make the events portrayed all the more gut wrenching. As the film spools out, some of our initial assumptions about the characters are turned on their head, and Irreversible is a cinematic experience that will impact you for days if not weeks afterwards. Again, this film is not for everybody; in fact, when screened at Cannes, large parts of the audience walked out during its jarring first 40 minutes. Those who remained were said to have sat in stunned, heartbroken silence for quite a while after it ended. The film graphically portrays terrible violence as well as graphic sexual acts, and contains an extended rape scene that illustrates the full, unremitting horror and unspeakable cruelty of that crime. It also contains one of the sweetest love scenes on film. That said, Irreversible is among the most exceptional pieces of cinema I’ve experienced. The violence portrayed is key to the film’s ultimate power, but again, Irreversible is not for those even slightly squeamish, or who might have personal issues with the events portrayed. But for viewers up to it, Irreversible offers an unforgettable cinematic experience.


I've also watched a whole bunch of the campy B-movie 70s horror flicks I so love (I Drink Your Blood, I Spit on Your Grave, etc.), but I know that flicks like these aren't everybody's cup of tea. Depending on what country you live in, most of the above recommended films are available on the popular streaming movie services (Netflix, Amazon Prime, Hulu). Again, I’d love to get readers' impressions of these films, as well as any recommendations of your own, in the comments section below. I’ll be back with our regularly scheduled MS related content in the next few weeks. In the meantime, happy viewing!

Remembering Bobby Kennedy

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 six 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 49 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, 49 years ago today. 

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable 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 realized. 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 social injustice and 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, a hideous debacle which resulted in the destruction of the reputations and lives 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 America one can only imagine that the arc of history might very well have been much more benign than the reality that ultimately came to pass. 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 likely 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.

The Starvation Chronicles: That's A Wrap!

Yippee, I’ve reached the end of the road of my Fasting Mimicking Diet (FMD). I’ve successfully made it through five days of dramatically reduced caloric intake, and I’m no worse for the wear. In fact, I feel pretty darn good! Of course, it’s still way too early to judge whether the FMD will be successful in positively bending the arc of my Creeping Paralysis. I can at least report that I’ve lost 5 pounds since I started the diet last Friday.

I’d say the FMD regimen was much easier to get through than I anticipated. Day one, during which I consumed 1100 calories, was no problem at all. My caloric intake was reduced to 800 calories on day two, a level that was maintained throughout the duration of the diet. I faced the most difficulty on day three, but even that wasn’t all that terrible, just some pangs of hunger. At no point did I experienced excessive weakness or dizziness, but then again, it’s not as if I’m a whirling dervish of physical activity. I’m sure the diet would be harder on somebody who was more mobile and engaged in a physically active life.

That said, kudos to the company that markets the diet, Prolon. Although the prepackaged foods aren’t cheap (I paid $220 for my five-day kit), and I’m sure the company makes a nifty profit on the deal, the supplied meals did a good job of keeping me from being famished despite the severely reduced daily calorie load. The soups, nutritional bars, crackers, and olives provided in the kit have certainly done a good job of keeping me well-nourished even as they slashed my caloric intake dramatically.

I’m scheduled to have a phone consult with my naturopath tomorrow, and I expect that I will repeat this exercise in dining austerity again next month, and probably the month after that. As I’ve mentioned before in these Chronicles, my naturopath – who works in my MS clinic and specializes in treating MS with natural remedies – has reported very good results in one of the first few patients who tried this diet. Of course, MS is a tricky beast and it’s nearly impossible to pin down just why any individual patient experiences upswings are downswings in their disease state, but sound scientific research does suggest that a starvation diet can trigger beneficial changes in body chemistry and kickstart cell regeneration.

At the very least, committing to the diet and seeing it through has provided me with a perceived mechanism to strike back at the disease, and that alone has given me an emotional lift. I find my mood darkens when I’m stuck in the doldrums between treatment options, and especially when it seems that those options may be running out. By hook or by crook, and with the help of a neurologist who is open-minded and not afraid to experiment, I’ve managed to occupy most of the 14 years I’ve spent dealing with this crap with active efforts to fight back. Unfortunately, none of these attempts to thwart the disease have proven to be of any lasting value, but maybe, just maybe, one of these days my efforts will strike paydirt.

A huge thanks to all the good folks who’ve left comments and sent notes of encouragement and advice these past five days. Despite my propensity for verbosity, I really don’t have the words to express my appreciation to each and every one of the readers who have been my virtual copilots during this flight of fancy starvation.

Finally, since I’m supposed to ease back into a regular diet starting tomorrow by sticking with fruits, vegetables, breads, and pasta, I’m thinking that a simple omelette, some fruit salad, and a bialy with a touch of cream cheese will make for a nice digestible lunch. Later, perhaps some linguine with white clam sauce for dinner. Yum!

Okay, signing off – 5 pounds lighter, with an empty stomach and a heart full of hope…