Tuesday, December 15, 2015

Creeping Paralysis

Back before the words Multiple Sclerosis entered the general lexicon, the disease, especially in its progressive forms, was commonly called Creeping Paralysis. A quick Internet search through the archives of the New York Times reveals the term being used on quite a few occasions dating back to the 1870s (when the archived materials begin), most often and quite disconcertingly within the text of an obituary. A typical example is the 1886 obit of a Mr. Benjamin Moran, an American diplomat stationed in London who was apparently quite the bon vivant, a “great society haunter” who was “smart, lively, and amusing” (click here to download a PDF of the obituary). As described in Mr. Moran’s written memorial, “For the last few years he was a dreadful sufferer of Creeping Paralysis, which rendered him completely helpless…”. Sigh.

Of course, we can’t be sure that Benjamin Moran suffered from Multiple Sclerosis, as Creeping Paralysis is an apt label for any number of similar maladies, such as ALS (Lou Gehrig’s disease), or advanced spinal stenosis. Still, Creeping Paralysis is a terrific descriptor of the effects of Progressive MS, so much so that I’ve often used the phrase here on these pages, and I’ve considered wielding it as an answer when people wonder out loud just why my backside is stuck in a wheelchair. “Creeping Paralysis” would certainly quench their curiosity more effectively, I would think, than the clunky and hard to decipher answer that I currently employ, “Progressive Multiple Sclerosis”. There is much confusion about just what the hell Progressive Multiple Sclerosis is, even among people with Multiple Sclerosis. Progressive Multiple Sclerosis sounds like some kind of politically left leaning version of the disease, whereby Creeping Paralysis sums up the disease and its perils in two easy to understand words, very clear and concise. “I have Creeping Paralysis”. Conversation over.

Unlike Relapsing Remitting MS, whose torments come in the form of acute attacks that eventually recede, sometimes leaving residual symptoms in their wake, Progressive MS is the gift that keeps on giving, inflicting a slow, steady decline in function leading to ever increasing disability over time. In other words, Creeping Paralysis. Mine first crept up in 2003 as a slight buckling of my right knee that only surfaced after I had walked several miles. I’d experienced any number of weird symptoms for years before, but it was the knee that finally sent me to the doctor. Over the next weeks and months, that initial problem spread to ever-increasing weakness invading my entire right side, insidiously creeping through my right leg, arm, and hand. Three years post diagnosis I needed an ankle brace to keep my right foot from dragging along the ground when I walked, year four saw me using a cane, and in 2008, five years after I’d been slapped with the MS label, my Creeping Paralysis had done enough damage to insist that I use a mechanical throne for ambulation.

Creeping Paralysis treats each of those it abuses differently. I know some folks who have had the disease for decades and are still walking, while others find themselves bedridden within 10 years, sometimes sooner. Generally, the disease treats women more gently than men, although, unlike Relapsing Remitting MS, which victimizes women far more often than men, Progressive MS attacks men and women in equal numbers. While there are currently about a dozen approved treatments (however imperfect they may be) that can help keep the worst ravages of Relapsing Remitting MS at bay, at present there are no treatments that have proven to be effective in even slowing down Progressive MS for the vast majority of the people it attacks.

During my first five years with the disease, the paralysis I experienced felt less like it was creeping and more like it was blitzing through my body like the Nazi armies crashing through Belgium on their way to overtaking a completely underprepared, overwhelmed, and horrified France. Five years may sound like a long time, but when those years see you diminished from fully functional to wheelchair reliant and from working to “on disability” they seem like the blink of an eye.

For many years my Creeping Paralysis was confined almost exclusively to my right side, leaving my left largely untouched, allowing me the hope that this would continue to remain the case and that I’d retain a fully functional left arm and leg, a situation I wasn’t happy about but with which I could make do. ‘Twas not to be, however, as whatever obstacles had kept the creeping temporarily restrained to one hemisphere of my body fell by the wayside, and for the last several years the paralysis has assaulted my right side as well, increasingly taking hold. Despite all efforts – and the list of those efforts is incredibly long and varied – my Creeping Paralysis has yet to meet its Waterloo (yeah, yeah, I know I’m mixing up my military metaphors, so sue me).

Increasingly, I’m finding that Creeping Paralysis is impacting not only my body, but my mind and spirit as well. As the disease has become more and more entrenched, and my body less and less able, I suppose it’s inevitable that the condition takes a psychological toll. I’ve learned that paralysis can extend beyond the physical realm. The bodily restrictions imposed by the disease are increasingly accompanied by a psychological reticence to test the boundaries defined by those restrictions; it’s far easier and much less disheartening to curtail activities that once gave me pleasure rather than find out for sure that I can no longer do them. Thus my old hobbies of shooting videos and taking photos from a camera mounted on my wheelchair have fallen by the wayside, my camera equipment gathering dust for the last 18 months or so, it too victimized by my Creeping Paralysis. The ever less dexterous fingers on my one working hand can’t properly control my camera and lenses, and my last attempts at photography proved to be nothing but exercises in frustration.

When simply getting dressed pushes the limits of what is physically possible, the prospect of committing to social activities becomes daunting. Healthy folks seem to have a hard time understanding this. After all, just a few years ago I was out in my wheelchair meeting them for lunch on a regular basis. Thus, despite my best intentions, Creeping Paralysis has frozen not only some of my body parts but some of my relationships as well. I can’t blame friends and family for drifting away in the wake of unreturned phone calls and unanswered emails, but I try not to blame myself, either. In addition to Creeping Paralysis, I have also to deal with widespread endocrine dysfunction and a hideously painful degenerative bone condition, and at times even when there is a willingness to interact, the effort required for lively conversation or the composition of a lucid note can be simply too much to muster. Creeping Paralysis seems to rejoice in imposing limitations on all aspects of life.

There’s a fine line between capitulating to the disease and adjusting to its ever-changing realities. I have found the that less I am able to do the less I am interested in doing. Being out and about in the healthy world, among all of the obliviously fortunate people whose limbs perform seemingly miraculous feats without any apparent effort – like walking or using a knife and fork – can offer much-needed distraction, but can also place a laserlike focus on all that I’ve lost, almost mocking me for those losses. Even watching television can become a seriocomic affair, as commercial after commercial advertises products that are no longer of any use to me, hawking them to a population of which I am no longer part. Cars, exercise machines, the latest electronic wonders, items that in some long-ago life might’ve piqued my intense interest now serve only to illuminate the ugly metamorphosis I'm experiencing courtesy Creeping Paralysis.

Despite the at times dour tenor of this essay, please know that through it all I still laugh far more than I cry, still strive to find nuggets of joy wherever I can, even if I have to dig through piles of manure to get at them. I’m fighting the many components of my disease as hard if not harder than ever. Earlier today my wife and I chuckled as we marveled over the fact that I’m taking medicines in pretty much every way they can be taken. I’m inhaling aerosolized antifungal medication to treat a potential mold infection in my sinuses; getting injections of testosterone as part of my fight against my endocrine issues, ingesting antimicrobial drops and liquid probiotic cocktails in an effort to rebalance my gut Microbiome, getting an intravenous treatment called plasmapheresis in an attempt to beat back the Creeping Paralysis, and taking pills by the dozen. We concluded that the only mode of drug delivery I’ve missed is anal suppository. I’ll have to get hard at work on that one. Not.

So there you have it, Creeping Paralysis and my experiences with it. Hopefully, with an assist from modern medicine, I’ll ultimately fare better with the disease than the unfortunate Mr. Benjamin Moran, whose obituary I highlighted earlier. Somehow, calling my illness Creeping Paralysis rather than its more modern and scientific name gives me some strange sense of satisfaction. No beating around the bush with a name like Creeping Paralysis, it presents the illness in all its stark reality. Using a term as impenetrable as Progressive Multiple Sclerosis in some ways insulates those involved from confronting directly the potential horrors of the disease, a trick at which modern medical nomenclature excels. I’d rather stare this bastard right in the eyes and call it what it is: Creeping Paralysis, a name as ugly as the disease itself.

Oh, if anybody can shed any light on "the culture of the jumping cat" that is mentioned in Benjamin Moran's obituary, I would be forever grateful. Again, you can download the obituary by (clicking here). I'd just love to know what was meant in the 1880s by "the culture of the jumping cat", but can find no reference to it anyplace else. Please leave any ideas in the comments section of this post.

Monday, November 23, 2015

Bits and Pieces: MS Diversions

Wow, I just checked and it’s been almost 7 months since I last did a “Bits and Pieces” post. These posts, compendiums of the latest and greatest MS news and info, have long been a regular feature on these pages. Somehow, I’ve really let things slide. Seems I’ve been a very naughty blogger. The blogging police are probably getting ready to mount a raid on my computer any day now, so I better get back on the beam, lest I be found guilty of blogging negligence and sentenced to reading the comments section of some celebrity gossip website until my brown eyes turn blue. For the record, Justin Bieber is NOT hotter than ANY of the guys in One Direction and anyone who thinks so is a big fat stupid loser!!!!! And the budding romance between Gwen and Blake is like the best thing that ever happened in the world ever ever ever!!!! I might have to cut down on watching of kitten videos so I can soak up every word being written about those two crazy love birds. OMG.

Just to refresh everybody’s memory, Bits and Pieces posts are collections of interesting items of MS related research, news, and other Internet MS flotsam and jetsam that have caught my attention in the recent past. Though there’s certainly been plenty of impactful MS info floating around the inter-webs during my long lapse in trying to anthologize it, I made the command decision to devote this post to a collection of MS related online communities, blogs, and other sites that I think might be of interest, places which can serve as welcome diversions in the online MS world. Personally, I can sometimes get so caught up in parsing through all the latest research that I neglect the touchy-feely human side of things. The sites that follow offer interesting twists on typical online forums, blogs, and whatnot. Especially the whatnot, along with the doohickeys and thingamajigs.

Please note, I know there are lots and lots of MS themed blogs and communities out there, and by calling attention to these few I don’t mean to slight any of the others. This isn’t a “best of” list, just a compendium of places that have stuck in my brain pan lately. So, without any further hemming and/or hawing, here are some suggested sites upon which to aim your eyeballs…

♦ Let’s start with a site that has long been near and dear to my heart, MS Kurmudgeons Korner (click here). MSKK, as it is affectionately known by its regulars, is an under the radar MS forum that is completely beyond the reach of any Internet search engines, making it accessible only to those in the know. The site adheres to a strict privacy policy, meaning that what is said in MSKK stays in MSKK upon pain of death. MS Kurmudgeons Korner is so named because it is a self-avowed rainbow and unicorn free zone where people are free to discuss the fact that MS sucks huge hairy monkey balls without fear of stepping on anybody's rose-colored glasses. Not that the place is without humor, as at it's often more fun than a night at the GiggleSnort motel, but it is definitely Nowheresville for those prone to utterances like “I have MS but MS doesn’t have me”.

Since MSKK is a closed community, it’s rare that the gates are thrown open in such a public fashion as this. However, due to the usual ebb and flow of the Internet, membership is down and an infusion of new blood will be welcomed. In all honesty, because of the progression of my illness and the incredible amount of time it takes just being sick (dammit), I haven’t been hanging out there nearly as much as I have in the past, but I guess that’s part of that whole ebb and flow thing.

So, if you are an MS cranky pants with a sense of humor, by all means mosey on up to MS Kurmudgeons Korner and knock on the door. You’ll be asked to sign a virtual privacy policy, and then introduce yourself with an opening post. Current members will then say hello and ask a few questions so that you can get a feel for them and them for you. After you tell a little something about yourself and prove that you’re not an undercover unicorn, you’ll soon be given free rein to join the community.

♦ Next up is a blog called Tripping on Air (click here), which is exceptionally well written by a classically trained singer with MS who lives in Toronto. The writer of Tripping on Air manages to blend her sardonic wit, keen sense of the absurd, and terrific observational skills into essays on everything from miracle cures to wetting the bed (click here) that have me laughing out loud and nodding in agreement, even though she sometimes talks about girly stuff that doesn’t quite jibe with my manly universe filled with bad zombie flicks and the Boston Red Sox. The blog’s only been around for about five months, so there’s not a huge amount of content, but what is there is well worth a look.

♦ My Counterpane (click here) takes a unique approach to building an online MS community. The site is built around members’ moods, as expressed by “moodifiers”, entries describing a person’s mood and what’s making them feel that way. What really sets this site apart is the ability for members to include videos in their moodifiers, so lots of folks choose to express themselves via short video clips rather than the written word. This all probably sounds kinda weird, but it’s actually pretty engaging. Posts can be sorted by mood, so whether you’re feeling angry or hopeful it’s easy to find others experiencing similar emotions, and members can build a little moodifier universes of their very own by following other members.

I personally feel much more comfortable behind the camera than in front of it, but the ability to just sit at of your WebCam and describe whatever emotions life and MS happen to be throwing at you at any particular moment does have its appeal. Unfortunately, these days I’m afraid I often look like one of the zombies in those bad flicks I love so much, and my WebCam would scurry off in horror if I ever turned it on when I’m in such a state. Good thing Rick from The Walking Dead hasn’t chanced upon me, otherwise I’d definitely have a knife sticking out of my head. Still, just having the option to communicate by video makes My Counterpane unique, and that in combination with its mood-centric emphasis has lots of people hooked.

♦ One of the most visually appealing MS blogs I’ve come across is Wheels & Red (click here), put together by an MSer in the Pacific Northwest who goes by the moniker "Wheels" (his wife is “Red”). Wheels (real name Kellen) was diagnosed in 2010 with progressive MS at the age of 25. His wife Meg is a photographer, and a quite talented one at that. Kellen is a very good writer, and his subject matter diverse. Now on full-time disability, Kellen uses his enforced freedom to explore his inner and outer worlds, and presents his viewers with an always interesting hodgepodge of visuals and essays that are both thought-provoking and entertaining.

The only thing I don’t like about Wheels & Red is that it makes me feel old. The writer and his wife are young and Bohemian in a very Pacific Northwest kind of way. Problem is that I’m now a 52-year-old fuddy-duddy who used live a Bohemian existence myself, back before our culture turned a generation of pierced and tattooed twentysomethings into a marketing demographic. My friends and I were slackers about a decade before slacking was a recognized social phenomenon (I believe the term was first brought into mainstream consciousness with the 1991 film “Slacker”). Wheels & Red reminds me of a time before I capitulated and allowed myself to slide down the slippery slope towards 9-to-5 normalcy – for a time I even wore a tie to work every day. Ack! Now, despite the fact that my own disease enforced freedom has returned me to a warped version of the slacker lifestyle, I still rue the fact that regardless of my loud and boasting youthful protestations that I would do no such thing, I sold out. And rather cheaply, at that.

Wow, where did that bit of existential angst come from? I guess a really good blog can do that to you, get your thought processes shooting off on unexpected tangential extracurricular activities, which I suppose is one of the great benefits of any successful creative effort. So, I guess the above paragraph marks Wheels & Red a success. Hopefully, whatever tangents it sends you off on won’t involve self chastisements decades in the making. May all your tangents be happy ones…

♦ Shift MS (click here) is a growing social network for MSers, founded by a young man in England with MS as a way of building connections with others who share the diagnosis. The site is very well put together, with lots of interesting features including a members’ forum, a variety of online groups to join, plenty of MS research info (including a large library of video interviews with MS researchers), and advice on lifestyle and medication choices. The site is pretty slick, so slick that at first I suspected it must have been created by one of the pharmaceutical companies as an undercover effort to collect valuable data on MS patients (I’m not being paranoid; some of the most popular MS and health-related websites are actually just such Trojan horses), but upon further investigation I discovered that Shift MS is a registered nonprofit in England, and appears to be run by a bunch of people with MS for the sole purpose of helping other people with MS. How refreshing! In spite of its numerous offerings, which could make for a cumbersome Internet experience, I found Shift MS to be quite easy to navigate and filled with interesting nooks and crannies. The site has a nice international flavor to it, also, with large groups of Brits, Americans, Canadians, and Aussies represented. Nothing like sharing a potentially crippling disease to break down international borders, huh?

♦ For those who eschew talking to real-life human beings and would rather converse with weird web-based artificial MS patients who hardly ever blink and could easily scare young children, do I have a site for you! The Consortium of Multiple Sclerosis Centers (CMSC) has created a bizarre little program called “My MS Conversation”, that you can download by (clicking here). If you are asked to enter a code for downloading, try 54S2. I promise, the program is absolutely safe, at least from a computer virus standpoint, though I can’t guarantee that using it won’t leave emotional scars.

Upon opening the program, you are “greeted” by four virtual animatronic “people” who move like they are inflated with helium and have big perfectly round largely unblinking eyeballs. One of the characters is a “nurse moderator”, and this jolly foursome is eager to engage you in “conversations” about managing multiple sclerosis. As you can see in the screenshot on the right, this is a very inviting bunch, so unnervingly bizarre that you might be fooled into thinking that you are interacting with actual animated virtual MS people, and not MS zombies just waiting for you to get close enough to your computer screen for them to reach out and EAT YOUR BRAINS! Lucky for me I'm hyper aware of the coming zombie apocalypse, and not easily fooled. This program would be better titled "The Limping Dead", except no matter how much I click on them or hover my face dangerously close to the screen just tempting them to reach out and EAT MY BRAINS these MS zombies won't get up off their seats, so I can't tell just how disabled any of them are. They look pretty healthy, though, which must mean that they've tricked plenty of other people into getting close enough to their computer screens for them to reach out and EAT THEIR BRAINS!

The creation of My MS Conversation was partially funded by two pharmaceutical companies, Teva and Mallincrodt. Teva is the manufacturer of Copaxone, the best-selling MS drug which last year brought in $4 billion in revenue. Yes, that’s “billion” with a “B”, which also just so happens to be the first letter in BRAINS! So, as you might guess, most of the “conversations” that the MS zombies engage in have to do with taking disease modifying treatments. But no matter, the entire experience of using the program is so otherworldly that I find it almost impossible to concentrate on anything the animated MS zombies are saying, as all other thoughts in my head are crowded out by one huge “WTF?”. As I might have mentioned before, I have a huge affinity for all things zombie, but this program could be the one exception. Still, I just can’t get myself to delete the damn thing from my computer, as every now and then I find myself clicking on its icon just to make sure I wasn’t imagining it all or that I didn’t conjure up My MS Conversation in a scary dream one night after eating a batch of bad enchiladas. But no, the program always turns out not to be a product of my warped imagination, but instead of somebody else’s. I definitely want no part of whatever enchiladas they were eating. Or were they maybe – EATING BRAINS!?!?

So go ahead, download My MS Conversation. I dare you.

Thursday, November 5, 2015

A Worthy Cause

(For those receiving this via email, the following post contains multiple videos which aren’t available for viewing in email format. To view the videos, please visit the Wheelchair Kamikaze website, by clicking here)

Okay, folks, I’m going to take the liberty of using my virtual soapbox here on Wheelchair Kamikaze to beat the drum for a worthy cause, an outside the box effort to make the lives of the disabled easier and maybe even a bit more joyful. I’ll include a bunch of videos which will help explain this project and the needs it addresses. If a picture is worth a thousand words, then a video must be worth several hundred thousand, and these short clips will save you the rigors of having to read yet another of my seemingly endless polemics.

I present to you the AXS Map project, which is the brainchild of filmmaker and fellow MSer Jason DaSilva. Jason recently won an Emmy for his documentary film When I Walk (click here), an eloquent and touching exploration of his journeys through the world of progressive MS. When I Walk received many well-deserved accolades at film festivals around the world, and was shown on US television as part of the PBS series POV. The film is available for instant viewing on a variety of streaming platforms, including Hudu, Vudu, iTunes, Google Play, and YouTube (click here).

If you haven’t seen the film, I highly recommend it. When I Walk offers an unvarnished portrayal of the realities of life with a chronic progressive disabling disease without dissolving into pathos, and also offers an uplifting love story to boot. There, now I’ve played film critic, testament to the teaching skills of my professors back in film school over 30 years ago. How nice that my degree hasn’t gone completely to waste…

Ah, but I digress. Back to the subject at hand, the AXS Map project (click here), which endeavors to create an online and mobile app based mapping tool that will allow disabled folks to readily identify accessible shops, restaurants, and other establishments in whatever city or neighborhood they happen to find themselves. The project is worldwide in scope, and its efforts to map locales both near and far involve interactive “mapathons”, organized mapping events that can be turned into fun little competitions. AXS Map project funding efforts are currently underway via a Kickstarter crowdfunding campaign intended to turn Jason’s vision into reality (click here). Here’s a video about AXS Map produced by Jason  that fully explains the project.

As most every disabled person can attest, the frustrations involved in simply trying to accomplish even the most mundane errand can often prove daunting and disheartening. Cities like New York, in which Jason and I both reside, are filled with obstacles that can go completely unnoticed by able-bodied folks, but are just about insurmountable to those of using canes, walkers, wheelchairs, or scooters. Here’s a great video Jason did for the New York Times that vividly illustrates the hassles routinely encountered by those whose legs are no longer their primary means of transportation…

Hey, it occurs to me that this would be a great place to dust off one of my old Wheelchair Kamikaze videos, which were the reason this blog got started in the first place. Way back in 2009 Wheelchair Kamikaze was born with the intention of it being a place to park the videos and photos I was shooting for my wheelchair, a spot on the Internet where friends and family could access my self-indulgent little projects. Among these self-indulgences was a video called “Searching for Audrey Hepburn”, in which I take a wheelchair journey through the streets of New York looking for a statue inspired by the late great actress’s indefatigable humanitarian work on behalf of the children of the world. Along the way I encounter quite a number of the obstacles that can make getting around New York in a wheelchair a genuine pain in the ass. Sadly, the friend I mention in the video, who inspired my search for the statue with his boundless affection for Audrey Hepburn, passed away about a year and a half ago. Rest in peace, Sir Brett, and thanks for the smiles…

And just for the heck of it, here’s a video of Jason receiving his Emmy award for When I Walk, which, even if you haven't seen the film, is poignant and touching in its own right…

Please support the AXS Map project, just waiting for your help to get kicked into high gear. If you’re not in a position to make a financial donation, consider organizing or taking part in a mapathon, thereby helping to make life that much easier for people with disabilities. For more info, just visit the AXS Map website (click here). Thanks.

Monday, October 19, 2015

Video: Promising FDA Approved Stem Cell Trial, Repeatedly Rejected for Funding by NMSS, Featured in TV News Segment

The only FDA approved Multiple Sclerosis stem cell trial currently underway in the US was featured last week in “The Big Idea”, a monthly segment seen on the local New York Fox Network affiliate’s evening newscast. The segment features the study’s lead researcher, Dr. Saud Sadiq (full disclosure: he’s my neuro), detailing the trial, and highlights a patient currently enrolled in the study who appears to be benefiting from the treatment.

The stem cell trial is being conducted by the Tisch Multiple Sclerosis Research Center of New York, and utilizes proprietary methodologies unlike those being used in any other stem cell study or treatment center in the world. As is detailed in the below video, raw mesenchymal stem cells are extracted from a patient’s own bone marrow and are then transformed in the laboratory into Neural Progenitor cells, stem cells specific to the central nervous system. The cells are then introduced directly into the patient’s central nervous system via intrathecal injection. Unlike HSCT, the type of stem cell therapy that seeks to stop or slow down MS disease progression by rebooting the immune system after ablating it using chemotherapy drugs, the Tisch Center’s trial is aimed directly at regenerating and restoring the damage done to brain and spinal cord tissues by the MS disease process.

Regular Wheelchair Kamikaze readers will recognize this as the very same trial that the National Multiple Sclerosis Society has repeatedly refused to fund for reasons that can only be deemed suspect, as I’ve detailed in several previous blog posts (click here and here). The Tisch Center’s trial is currently an early phase 1 study and is in urgent need of additional funding in order to expand into a larger and more comprehensive phase II trial.

As the Tisch Center is not affiliated with any academic institution or hospital and is a completely independent nonprofit organization, its research efforts are entirely reliant on private donations and institutional grants for continuation. Due to funding shortfalls, the trial is currently on precarious financial footing despite showing tremendous potential and promising early results. One would hope that the NMSS would see fit to reconsider its previous withholding of funds and do its part to help further the only FDA approved Multiple Sclerosis stem cell trial in the USA.

As is evidenced by this news segment, the Tisch Center stem cell trial has the potential to dramatically change the MS treatment landscape. I’d urge all who feel that the National Multiple Sclerosis Society should reverse course and support the Tisch Center to contact the Society and voice their opinions. The  email addresses of the Society’s executive staff can be accessed by (clicking here), and the phone number of the NMSS is 1-800-344-4867

Please keep all communications polite, as the NMSS may in this instance be misguided, but it is not an adversary. As my grandmother used to tell me, you can catch more flies with honey than you can with vinegar…

Thursday, October 15, 2015

Ocrelizumab Update – RRMS Trials Successful; PPMS Trial Shows Positive Effect, But Many Questions Left Unanswered

When I last posted to Wheelchair Kamikaze, I profiled the experimental MS drug Ocrelizumab, which was developed by Swiss drug giant Roche (and their US subsidiary Genentech). In press releases put out by the company two weeks ago (click here), Ocrelizumab was touted as the first MS drug shown capable of putting the brakes on Primary Progressive Multiple Sclerosis (PPMS) – a subtype of the disease which until now has been largely untreatable – as well as it being highly effective in treating the more common Relapsing Remitting Multiple Sclerosis (RRMS). These results were even more noteworthy because Ocrelizumab is the first MS drug to specifically target immune system B cells, while other currently available MS drugs (Tysabri, Gilenya) were developed to target T cells, which until now were believed by many to be the primary culprits driving the MS disease process.

Though the initial Ocrelizumab press releases were scant on details, the news certainly appeared promising, though reservations were expressed by many MS researchers based on Ocrelizumab’s development history and its close similarity with another Roche product, Rituxan, a much older drug that had gone through early trials in RRMS (very successful) and PPMS (largely a failure, but with some hints of success) back in 2005-2008. Rituxan’s development as an MS treatment was halted by Roche because of what many believe to be strictly financial concerns. Reading my previous essay (click here) will provide much background on Ocrelizumab’s development and the issues surrounding the drug.

Roche presented the details of the Ocrelizumab RRMS and PPMS trials this past weekend at the ECTRIMS conference in Barcelona, Spain. The RRMS trials were named OPERA I and OPERA II, and the PPMS trial was named ORATORIO. The results of the OPERA I and OPERA II RRMS studies were indeed impressive. These studies compared Ocrelizumab to Rebif, an interferon drug long used to treat RRMS, and found that treatment with Ocrelizumab resulted in a 50% reduction of annualized relapse rates, a 40% reduction in progression, and an 80% reduction in enhancing lesions as shown on MRI when compared to patients taking Rebif (click here – login required, but sign-up process is easy and well worth it). Adverse events were found to be similar in both groups, which is encouraging as Rebif is considered one of the safer MS medications currently available.

It should be noted, however, that the two-year length of these trials may be insufficient to detect longer-term problems that may develop as a result of the intense B cell suppression that is Ocrelizumab’s primary mechanism of action. Nevertheless, it does appear that Ocrelizumab will become a very valuable weapon in the growing arsenal of drugs used to combat RRMS, though, like all current MS drugs, it doesn’t do a thing towards actually curing the disease. But I’ll save that rant for another day…

(Please note, the following information and accompanying commentary were largely gleaned from materials contained in articles and interviews that can be accessed by clicking here, here, here, and here. I would urge all to read them for greater context and background)

Results of the ORATORIO PPMS study, while initially impressive, still remain riddled with questions. Despite the screaming headlines hailing Ocrelizumab as a “revolutionary new MS drug” by the – as usual – hyperbolic mainstream medical media (click here), the actual picture remains far more nuanced. The ORATORIO trial design was heavily influenced by the results of the failed Rituxan PPMS trial back in 2008. Though that trial was officially deemed unsuccessful, subsequent examination of the data revealed that a subset of PPMS patients in the study were seemingly helped by the drug. These patients were generally younger, had shorter disease duration, were less disabled, and had enhancing lesions on their MRIs. It’s thought that patients who fall within these parameters make up about 15% of the overall PPMS population.

It appears that in designing the ORATORIO study, Roche chose trial subjects who were most likely to benefit from Ocrelizumab treatment, specifically those who fit the demographic and disease parameters outlined above. As presented at ECTRIMS, the results of the ORATORIO study are indeed impressive, demonstrating a marked slowing of disease progression, a reduction in MS enhancing lesions, a reduction in brain volume loss, and a stable time to walk 25 feet when compared to trial subjects given a placebo. Of course, these results also mean that many of the ORATORIO trial subjects were patients with enhancing lesions (only a fraction of PPMSer’s have such lesions) and who were relatively less disabled (as evidenced by the fact that they could still walk). The majority of trial subjects also appear to have been relatively recently diagnosed, with a disease duration of approximately 3-5 years, and were under 50 years old.

Unfortunately, when Roche presented the ORATORIO results at ECTRIMS, they declined to detail the breakdown of results by patient subgroups, claiming that such subgroup analysis had not yet been satisfactorily completed. This beggars belief, as one would think that examining the data in such a way as to determine which patient groups benefited the most from treatment would be among the highest research priorities, especially given the mixed results of the previous Rituxan PPMS trials. Instead, Roche chose to give a broad overview of favorable trial results without answering some of the most important questions about those results, primary among them whether or not the patients who most benefited were those with enhancing lesions. Indeed, in the Q&A period following Roche’s presentation, presenters were questioned on just this issue by conference attendees, who were given no suitable answers other than promises that the data would be forthcoming. Roche's presentation led several experts to say the primary progressive data were less impressive than those seen with Ocrelizumab in relapsing remitting disease.

Although Roche portrayed the safety profile of Ocrelizumab in the ORATORIO trial to be excellent, they did note that there were 11 cancers detected during the ORATORIO trial on patients taking Ocrelizumab, versus only two in the placebo group.

The results of the Ocrelizumab RRMS and PPMS studies have not yet been published in any scientific journals, and it is expected that much additional data will need to be provided to publishers before the trial results will be deemed fit for publication. Getting the drug through the regulatory approval process required by government agencies such as the FDA will also necessitate a much greater detailing of trial results, including subgroup analysis which will shed light on just which patient groups were treatment responders. While it seems that the RRMS results will likely stand up to more intense scrutiny, the PPMS results may prove to be less dramatic than originally portrayed when subjected to the spotlight of journal publication and regulatory approval.

That said, even in a worst-case scenario in which only a small subgroup of PPMS patients, those with enhancing lesions,  prove to benefit from Ocrelizumab treatment, the fact that any headway at all has been made in treating PPMS is a significant step forward. If in fact the drug’s efficacy is limited to patients with enhancing lesions, and such lesions are most likely to be found in patients in the earliest stages of the disease, the importance of early diagnosis will be brought to the forefront. Given current diagnostic tools and techniques, many patients with PPMS aren’t correctly diagnosed until the disease has long since taken hold, beyond the period when enhancing lesions are likely to be present. Additionally, the fact that Ocrelizumab targets B cells should open up new avenues of investigation for MS researchers worldwide, as this potential mechanism of MS disease action has until now been largely discounted by most mainstream researchers. Perhaps these investigations might finally unravel some of the deepest mysteries of the disease, and (crossing the fingers I can still cross) eventually lead to a cure for all forms of the disease.

At this point, only time will provide us with the answers we seek. The next chapters of the Ocrelizumab saga will be getting these studies peer-reviewed and published in medical journals, a process which will shed much light on issues still in need of clarification. Roche is targeting the first quarter of 2016 for regulatory approval in both RRMS and PPMS. It will be very interesting to see whether or not Ocrelizumab is approved for the PPMS population as a whole, or, as many researchers suspect, for only a subgroup of progressive MS patients. Again, even if the latter case holds true, we will have at least made some headway in the fight against an insidious form of Multiple Sclerosis that until now has defied efforts to combat it.

At long last, it appears that the attentions of Multiple Sclerosis researchers are finally focusing on progressive MS, an area of investigation which until very recently had largely been neglected. The confounding problems represented by progressive MS will never be solved until well-funded trials are directed specifically at this disease subtype, a circumstance that finally seems to be coming to fruition. And that’s no small thing…

Sunday, October 4, 2015

Experimental MS Drug Ocrelizumab Deemed A Success In Progressive MS Trial, But Questions Remain

Last week, the drug company Genentech (a subsidiary of Swiss drugmaker Roche Pharmaceuticals) announced that its Phase III trials for treating Primary Progressive Multiple Sclerosis with the experimental MS drug Ocrelizumab had met with success. According to a press release titled “Roche’s Ocrelizumab First Investigational Medicine to Show Efficacy in People with Primary Progressive Multiple Sclerosis in Large Phase III Study”, the drug met the trial’s primary endpoint, “showing treatment with Ocrelizumab significantly reduced the progression of clinical disability sustained for at least 12 weeks compared with placebo, as measured by the Expanded Disability Status Scale” (click here). Earlier this summer two previous trials had shown Ocrelizumab to be more effective than the beta interferon drug Rebif for treating RRMS, resulting in reduced relapse rates, number of MS lesions, and a reduction in progression of disability (click here). Ocrelizumab is an intravenous drug that is administered twice over a two-week period, and then not again for six months.

While this would all appear to be great news, especially for people with PPMS who currently have no approved treatment options, just how great this news actually is remains to be seen as the press release provided absolutely no details on the study results, which will only be revealed on October 9 and 10th at the annual European MS conference ECTRIMS, being held in Barcelona, Spain. Understandably, news of Ocrelizumab’s success in treating PPMS has created quite a buzz in the MS community as well as in the financial pages of publications around the world, as the drug stands a good chance of becoming the latest multibillion-dollar blockbuster MS treatment (click here).

There is reason to believe, however, that Ocrelizumab may only be effective in treating a subset of patients suffering from Primary Progressive MS, specifically those who are less disabled (still walking), younger, and who display enhancing lesions on their MRIs. And though the press release states that the side effects experienced by study subjects taking Ocrelizumab were not much different than those who were given a placebo, back in 2010 trials testing Ocrelizumab for the treatment of Lupus and Rheumatoid Arthritis had to be abandoned because of an unacceptable number of serious and sometimes fatal opportunistic infections seen in trial subjects (click here).

How can I make any assumptions on Ocrelizumab’s efficacy at all based on the scant details divulged in Roche’s press release, you may ask? Well, it turns out that Ocrelizumab’s mechanism of action is nearly identical to that of a much older drug also manufactured by Roche, called Rituxan (Rituximab), which has been used for decades to treat cancers of the blood and for the last seven or eight years, on an off label basis, to successfully treat Relapsing Remitting Multiple Sclerosis.

In fact, back in 2008 Rituxan completed early stage trials (phase I and phase II) investigating its use in treating both RRMS and PPMS. In these earlier trials, Rituxan was deemed successful in treating RRMS (click here), but the drug failed in its much-anticipated trial for PPMS (click here). Subsequent to the PPMS trial’s completion, however, researchers combing through the data discovered that Rituxan did appear to have a beneficial effect on a subset PPMS patients, specifically those who were less disabled, were 50 years old or younger, and who had enhancing lesions, (click here). Ocrelizumab’s mechanism of action is so nearly identical to Rituxan’s that within the industry the drug has been nicknamed “brother of Rituxan”.

Why then was Rituxan not further investigated for the treatment of RRMS and PPMS, Roche and Genentech instead shifting their all of their attentions to costly process of developing a brand new drug that works in a very similar fashion, Ocrelizumab? Well, this is where things get interesting and more than a little bit curious. If I were a cynical man I might conclude that purely financial considerations were involved, but far be it for me to be so cynical. Instead, I’ll present you with the evidence as I know it, from which you may draw whatever conclusions you wish.

As I mentioned earlier, Rituxan is an older drug, and it is scheduled to lose its patent protection this year. Once the Rituxan comes off patent, Roche will lose its exclusive rights to the drug and thus the ability to generate tremendous profits from marketing it (click here). This fact made the return on investment of proceeding with very costly late stage MS trials in 2008 decidedly negative even if they proved wildly successful, because after 2015 another company could step in and market a generic version of Rituxan, thereby killing the drug’s profit making potential for Roche.

Both Rituxan and Ocrelizumab are in a class of drug called monoclonal antibodies, which are manufactured antibody cells that work by targeting specific cells in the human body. Rituxan and Ocrelizumab work by attacking B cells, one of the two primary types of cells that comprise the human immune system (these two types of cells are called T cells and B cells). They both seek out the same protein expressed on the cell walls of B cells, CD 20, and both drugs ultimately destroy almost all of the B cells in the human body using nearly identical mechanisms.

This anti-B cell approach is not taken by any other current MS drug, as until very recently it was believed that the MS disease process was driven primarily by T cells, which are the focus of drugs such as Tysabri and Gilenya (the latter of which recently failed in a recent PPMS trial). The fact that Rituxan and Ocrelizumab – which exclusively target B cells – are proving to be so effective in battling MS is forcing researchers to completely rethink much of what has been assumed in the understanding of the disease. Roche’s recent Ocrelizumab press release also contains hints that the drug’s action on B cells may have some neuroprotective properties, which if true would be truly remarkable. Of course, since Rituxan has already been used successfully to treat RRMS for quite a few years, the knowledge that a B cell immunosuppressant was capable of dramatically impacting the Multiple Sclerosis disease state was readily available, but also easy to ignore given the somewhat rogue nature of treating MS with Rituxan.

The difference between Ocrelizumab and Rituxan is the fashion in which they are manufactured. All monoclonal antibodies are “biologic” drugs, meaning they are derived from living animal cells, usually from a combination of mouse and human tissues. Most older monoclonal antibody drugs, such as Rituxan, are what is known as “chimeric monoclonal antibodies” (click here), meaning they contain both mouse and human DNA. Newer drugs such as Ocrelizumab are “humanized monoclonal antibodies” (click here), and have their DNA structure manipulated to more fully resemble completely human cells.

Although one might assume that humanized monoclonal antibodies would always be preferable to those that contain non-human DNA, Rituxan has been used for decades and has shown itself to be a very safe and effective drug. Although some cases of opportunistic infections, including PML, have been associated with Rituxan, they’ve appeared far less frequently than those seen with Tysabri (click here). Rituxan has proven itself successful in treating RRMS both in trials and in real life practice (the drug is FDA approved for the treatment of Rheumatoid Arthritis, and is used off label to treat a variety of other autoimmune diseases).

The Rituxan PPMS trials, though at first deemed a failure, did reveal a subset of PPMS patients on whom there was evidence of efficacy, and it appears that the Ocrelizumab PPMS trial was designed to capture as many of this type of patient as possible (click here). Had Roche pushed ahead with its Rituxan MS trials even in the face of a looming patent expiration we might have had another very effective treatment for RRMS, and perhaps even PPMS, for at least the last five years. Alas, ‘twas not to be, quite likely because Rituxan was scheduled to soon lose its patent protection.

I truly hope that when the full details of the Ocrelizumab trials are revealed at the upcoming European MS conference they exceed all expectations and make Rituxan look like a rusty old Model T compared to Ocrelizumab’s shiny brand new Maserati. If the new drug is in fact capable of stabilizing the disease progression of the majority of PPMS patients we will have a true game changer on our hands. Even if, as I suspect, the drug is shown to be effective on just a subset of PPMS patients – those who are younger, less disabled, and have enhancing lesions – it will represent a tremendous leap forward in the treatment of what has up until now been an untreatable disease. The fact that the drug exclusively targets B cells and benefits both the relapsing remitting and progressive forms of Multiple Sclerosis should send researchers scrambling to develop an entirely new model of the MS disease process, and, who knows, may lead to an eventual understanding of the ever elusive underlying cause of Multiple Sclerosis.

Here’s to hoping that the new drug proves to be as safe and reliable as the old one, Rituxan, and Ocrelizumab will become not only a powerful new weapon in the fight against MS, but also a catalyst for an entirely new way of thinking about the disease. For people with PPMS, this successful drug trial, even if limited, finally opens a door to treatment options and allows rays of hope to filter in through the clouds. We’ll begin to get our answers in just about a week, and I for one can’t wait for the data to be released.

Geez, that last line may be just about the wonkiest sentence I’ve ever written. I guess I just have to own up to the fact that I’m now a full-fledged MS research nerd…

Wednesday, September 23, 2015

Last Week’s Webinar on Complementary Medicine and Multiple Sclerosis Now Available Online

For those who missed the live webinar I participated in last week, it’s now available online for your listening pleasure. Okay, maybe "pleasure" is taking it a little too far, but the webinar is packed with lots of useful information. I was joined on the iConquerMS sponsored webinar by Dr. Deneb Bates, a naturopathic physician who I’ve worked with for over seven years. As is in ample evidence during the webinar, Dr. Bates really knows her stuff.

Topics covered include the doctor-patient connection, biotin, vitamin D, natural remedies for spasticity, oxidative stress, and more. There’s much material about progressive MS, along with actionable info that you can discuss with your treating physicians.

I believe the webinar can only be viewed on a desktop or laptop computer, not on a mobile device. I’d love to hear opinions from those who give the webinar a listen, so please make use of the comments section of this post to leave your thoughts. All critiques, both positive and negative, are welcome, so please don’t be shy…

Click the link below to view the webinar.

Thursday, September 17, 2015

Reminder-Live Webinar Tonight, Thursday, September 17 at 8 PM Eastern Time

Just wanted to remind everybody about tonight’s iConquerMS webinar, in which I’ll be joined by naturopathic physician Dr. Deneb Bates and the Accelerated Cure Project’s President Robert McBurney for a 60 minute discussion on “Besides My MS Medications, What Else Can I Do?” We’ll be exploring complementary and alternative medical approaches to treating MS and its symptoms, and topics will include biotin, diet, vitamins and supplements, and other integrative approaches.

In order to attend the webinar, please register (click here) to receive an email with instructions on how to connect to the event Thursday evening. During the registration process you’ll be able to submit questions of your own. There are already several hundred people registered, but don’t worry, there will be plenty of room for everyone. Please don’t forget to use deodorant, though, it could get pretty crowded and I'm sure you wouldn't want to offend.

I told the organizers that I thought it would be cool if I did the entire webinar in a fake French accent because, you know, it’s classy. Sadly, they said no, and attendees will instead be subject to my glorious native New York intonations. So come on, youse mugs, register now or I’ll hit you so hard that your kids will come out shaking…

UPDATE: here are a list of the links that were put up on the screen at the end of the webinar. Several folks have asked that they be made available…

American Association of Naturopathic Physicians


International Multiple Sclerosis Management Practice

Accelerated Cure Project

Tisch MS Research Center

Saturday, September 12, 2015

Please Join Me for a Live Webinar on Complementary and Alternative Medicines In the Treatment of MS, This Thursday Night, September 17, 2015, at 8 PM Eastern Time.

This coming Thursday, September 17, 2015, I’ll be participating in a live 60 minute webinar discussing the topic of complementary and alternative medicines in the treatment of MS, held by the iConquerMS initiative (click here). I’m a big supporter of iConquerMS, a patient driven research project, and I urge everybody to visit their site, join up, and participate in helping to rid the planet of this terrible disease.

During this Thursday’s webinar I’ll be joined by Dr. Deneb Bates, the Naturopathic Doctor who works at the MS clinic at which I am a patient, the International Multiple Sclerosis Management Practice here in New York City (click here). Dr. Bates is among the sharpest doctors I’ve ever worked with, and believe me, I’ve worked with a lot of them given the wild and wacky nature of the Three-Headed Beast of an illness that is trying to have its way with me (click here). Moderating the event will be Robert McBurney, the President and CEO of the Accelerated Cure Project, the extraordinary nonprofit MS research group that is facilitating the iConquerMS project.

I expect the webinar to include a wide range of topics, including the use of diet and supplements in the treatment of MS, many of the popular alternative Multiple Sclerosis treatment methodologies being utilized by the MS patient population, and the importance of taking an integrative medical approach to treating the disease. There will be ample time for questions and answers, and by registering for the webinar online (click here) – be sure to hit the "register" link on the webinar info website – you’ll have the opportunity to submit questions on your own particular topic of interest. There will also be an interactive chat box included on the webinar screen, allowing attendees to submit questions during the live event.

Unfortunately, my request that Dr. Bates and I get to sing some of my favorite tunes from “West Side Story” and then maybe reenact the “I Coulda Been a Contender” scene from On the Waterfront (click here) during the webinar were respectfully denied, but I I agreed to do the event anyway. Hey, no sacrifice is too great for the cause, so please register and actively participate by submitting your questions…

UPDATED 9/13/2015: For those who cannot attend the live webinar, it will be archived for later viewing/listening. I'll post a link to the archived webinar as soon as it's posted to the net.

Wednesday, September 2, 2015

Thoughts Formed While Staring At The Ceiling

I’m baaaaack! Due to circumstances beyond my control, it’s been quite a while since I posted anything to this blog. My long absence from the blogosphere (is there an uglier word in the English language?) was not due to alien abduction, time travel, or simple lack of interest, but rather because I was, in a word, sick. Sicker than normal, that is. So sick that I could barely get out of bed for about six weeks, feeling, as they say in the hallowed halls of medicine, horrendously yucky.

Turns out that my case of the horrendous yuckies was caused not so much by my mysterious and ever progressing neurologic crap, but rather an obstinate sinus infection and – mostly – my completely messed up endocrine system, which decided to go utterly out of whack. Take it from me; having an utterly out of whack endocrine system is definitely not more fun than a barrel of monkeys, or even one monkey with or without a barrel. After two rounds of antibiotics and much tinkering with my various endocrine meds, I’m finally feeling halfway human. Since there are strong suspicions that I may only be half human anyway, things are definitely looking up.

Speaking of looking up, my six weeks spent in bed doing my best impersonation of an area rug gave me plenty of time to do just that, look up and study the intricacies of the ceiling over my bed. Since that pastime got old pretty fast, instead I couldn’t help but start peering deep within my own brainpan, an activity that comes dangerously easy to me anyway, given my lifelong proclivity for introspection. While there are plenty of interesting nooks and crannies inside that creaky old noggin of mine, there are also all kinds of surplus flotsam and jetsam in there as well, along with some scary beasties that are better left undisturbed lest they wrap their tentacles around your naughty bits and begin taunting you with really bad impersonations of Ernest Borgnine in “Marty” – a wonderful movie which if you haven’t seen already I highly recommend you watch right this second (click here).

Also found stuffed in the neglected dusty and cobwebed steamer trunks of my mind were memories, lots and lots of memories of people, places, and things, some of which hadn’t seen the light of day in decades. It’s amazing how many seemingly trivial moments remain captured in crystal clarity in our heads long, long after they occurred. Some were a treat to revisit, others not so much. Nevertheless, all of this mental poking, prodding, and reflecting done during my enforced period of respite resulted in some observations on life with and without chronic illness, some of which I thought I’d share in an attempt to make my time spent infirm not a complete waste. Some of the these may be trite and/or unoriginal, others a bit more significant, but I think all are true. Do with them what you will, but please keep your Ernest Borgnine impersonations to yourself…

♦ Time flies even when you’re not having fun. I’ve been diagnosed with “atypical” MS for over 12 years, and have been dealing with various troubling symptoms for longer than that, during which time I’ve lost the use of the entire right side of my body and an increasing amount of my left, and still it feels like all those years went by in the blink of an eye. Time is every person’s most precious possession, and each passing moment diminishes our allotment of this priceless endowment, never to be recovered. Time spent wallowing and worried over things inconsequential is time indeed wasted, and in the grand scheme of things almost all circumstances and situations except the absolutely most dire turn out to be inconsequential. With few exceptions, lost loves give way to new romances, lost jobs to fresh opportunities, lost monies to refilled coffers. As long as a person is of sound mind and body the power to reshape their destiny is entirely theirs to command. Once recognized, past mistakes and self-destructive patterns can serve as illuminating roadmaps to a more fulfilling future. Not that the losses shouldn’t be felt, but letting those hurts linger and poison future moments, moments filled with endless possibility, amounts to time spent in a prison of one’s own making. Regrettably, a lesson I learned far too late in life. Another lesson I learned far too late in life is that trying to put your underpants on over your head is but one more terrible waste of time. Go figure.

♦ Judging people by their outward appearance is about as foolhardy as it gets, unless they are blood spattered and brandishing weapons. As I’ve previously recounted on these pages, at one point in my life I found myself an unwilling resident of the state of Florida, very much a stranger in a strange land. It seems I shared little by way of aesthetic sensibilities with most of the other residents of The Sunshine State, and for quite some time I felt extremely isolated. As I got to know people, though, most of whom looked and thought very differently than the people I was used to socializing with in New York or Boston, I came to realize that many of them were full of delightful surprises. One very burly and proudly blue-collar man, who at first glance would seem to be the antithesis of the artsy types I hung out with up north, turned out to be one of the most interesting and entertaining friends I’ve ever known. One thing I realized we shared early on was a taste for booze and bars, and on one of our first nights out on the town together, after downing a few, he confounded me by suddenly spouting by rote memory verse after verse of Rudyard Kipling poetry, recited with a heartfelt vigor that left me dazzled. “If you can make one heap of all your winnings, and risk it on one turn of pitch and toss, and lose and start again at your beginnings, and never breathe a word about your loss…”. During the rest of my Florida years we would have quite a few inebriated adventures together, and through them all I’m sure I learned more from him than him from me. I haven’t seen or spoken to my friend in at least 16 years. Denny, if you’re out there, thanks for the surprises and all the good times.

♦ On that note, it’s vitally important to let the people who brighten your world know just how much they mean to you. No need to get all gushy and maudlin, but acknowledging the good people now will save you regret later on. I had the good fortune of working closely with two of the most brilliant people I ever met, at a major audio and video production studio here in New York City. When I first received my MS diagnosis they were both visibly upset and tried to express their concern and sympathy as best they could, genuinely chagrined at the bad break I’d received. Well, 12 years later I’m still here and they’ve both since passed away, one with shocking suddenness and the other after a long illness. I never really expressed to either one how special I thought they were, at least not directly. We cry at funerals not for the departed but for ourselves, for everything left unsaid and for the part of us the lost take with them. I have an awful lot of phone calls I need to make.

♦ While we are still on the subject of people, although it is foolish to judge folks by their outward appearance, judging them by the company they keep can save you a whole lot of trouble. Birds of a feather, as they say. I once had a long-term relationship with a woman who, on paper, seemed almost perfect. She was extremely easy on the eyes, had an interesting, even noble profession, was possessed of a sharp mind and a keen sense of humor, owned two great dogs (a big plus in my book), and had wonderful parents. The only thing that bothered me about her from the outset was her friends. Though this may sound impolite, they all made my skin crawl and seemed to me on the whole to be a thoroughly distasteful bunch. The passage of time would confirm my instincts about pretty much the entire crew, and despite any initial illusions otherwise, my ex turned out to be a great fit among them. Of course, in retrospect, early on I chose to willfully ignore copious signs of this woman’s toxicity, for I was truly a fool for beauty. Unless extraordinarily motivated, people generally stay true to their nature and if you think that you are somehow going to change them you’re cruisin’ for a bruisin’… Years later I married a woman with a kind heart and genuinely good soul, beautiful both inside and out. I suppose the universe taught me a lesson I desperately needed to learn, and boy, I sure am glad I learned it.

♦ Chance plays a tremendous role in shaping the contours of a life, but there are key moments when decisions made or not made, or actions taken or not taken, can change the whole ballgame. How important it is to recognize those moments and in doing so bend the fates to your favor. As a young man I suffered greatly from HUMA (Head Up My Ass) syndrome, and lived my life with all the conviction of a fart in a windstorm, mindlessly rather than mindfully. Though I harbored grand dreams of fame and fortune, I spent far too much time dreaming rather than doing. I did manage to eventually find success in what many people consider a “glamour” industry – video and television production – but I always had gnawing within me the feeling that I was meant for other things. When my illness forced me to “retire” and eventually start this blog, I discovered a much truer me, a me that had been MIA for decades. Fear, I now realize, played a tremendously negative role in the direction of my life, fear of both success and failure, playing itself out in too many ways to count. Lying sick in bed this last month and a half I sifted through all of the chances missed and all of the roads not taken, almost all due to lapses in confidence, neurotic apprehensions, or sometimes simply the weight of inertia, and I was overwhelmed by the sheer magnitude of all of the collected “what if’s”, a latticework of paths left unexplored. Who knows if any of them any might have led to a place without MS? In a weird twist of fate my illness has resulted in some of my dreams finding realization, but geez, the price has been steep. I suppose such things don’t come cheap, though. Unless, of course, you’re a Kardashian.

Okay, with that I’ll leap off of my soapbox (as if I could even get on a soapbox, or leap). Thanks to all of you for taking the time to read Wheelchair Kamikaze, and for commenting, sending notes, and breathing life into this thing. You’ve given method to the madness of my getting sick, and for that I am eternally grateful. When they find a cure for this whole MS thing you’re all invited over to my place for a shindig that will leave my neighbors pissed off for years…