A Bump in the Road

I'm unhappy to report that I had to spend the last 5 days in the hospital. After undergoing a spinal injection of methotrexate as an experimental treatment to stop the progression of my disease, I developed aseptic meningitis. This is a non-infectious form of meningitis caused by my body's reaction to either the drug itself or one of the chemicals used to stabilize it. Basically my immune system went on the attack causing massive inflammation to the lining of my brain and spinal cord, resulting in high fever, headache and extreme weakness. Although I'm now home and feeling somewhat better, I'm still running a fever and I'm not sure how long this will continue. As soon as I'm up to it, I'll be back to my usual shenanigans. Until then I hope that all of the people who have commented on my previous post or have sent emails will understand the delayed response. Thanks to my dear wife Karen for her support throughout this mess, and who's fingers are typing this post. A full account of all of this (including incredibly inept nursing and an extremely colorful roommate) as soon as I'm up to it.

One Lifetime, Many Lives

"I've been a puppet, a pauper, a pirate, a poet, a pawn and a king…" "That's Life", made famous by Frank Sinatra

When telling stories about my past, I often find myself prefacing them with the phrase, "In another life…” Truly, some of the tales I tell from my personal history, given my current circumstances, do now seem to have been plucked from some other existence. My diagnosis of MS, and my subsequent taking leave of the working world due to disability, placed a full stop in the course of my life, creating a gaping chasm between my then and my now.

In retrospect I can see that even before my diagnosis, the whole of my existence could be divided into a series of chapters, defined by any number of parameters: age, location, relationship status, employment situation, emotional state. All of these chapters, though, shared a web of continuity, and although some changes were more dramatic than others, there was a narrative strand that bound them all together.

Not so with the chapter entitled "Multiple Sclerosis", which veered so sharply off plot that it not only transformed my physical reality, but in some very tangible ways forced changes to my very perception of self. The opportunities for introspection afforded by days upon days filled with no preordained activities have resulted in some unexpected realizations about myself, others, and the complexities of my previous, healthy, existence.

I grew up in New York City, and at age 18 left for college in Boston, where I wound up spending most of the 80s, first as a student, and then as a first generation slacker, living a very bohemian life as part of the city's musical underground.. After a brief return engagement in New York, the 90s found me almost accidentally residing in Fort Lauderdale, Florida, a place I'd never imagined I'd live, and where I never quite felt at home, but where my career took form, and the vagabond became, in fits and starts, a responsible citizen. The end of that decade found me gratefully heading back up North, home to New York City, whose rhythms I slipped back into with the ease and comfort of a favorite old sweatshirt, and which seemed as happy to see me as I it.

Of course, within each of those neatly divided geographic stanzas lie many different notes, some of them sweet songs of triumph and delight, others dark dirges of despair and disappointment. In between the highs and the lows were stretches of mere existence, the steady drone of days turning into weeks, and weeks into months. Along the way, as I navigated all of the peaks and valleys and long plateaus, I inevitably evolved and transformed. Looking back, there are some incarnations of myself whom I embrace fondly (I really like that guy in the 80s who dressed like a gypsy and thought he'd be the next Mick Jagger), and others at which I can simply do nothing but cringe and roll my eyes (not so fond of the fella who was such a fool for beauty that he allowed himself to be emotionally abused by a lovely sociopath). So many different me's, some who would barely recognize the others, but all of whom, for better or worse, equal the sum total of the person I am today.

Typically, for those enormously lucky enough to not step into one of the many calamitous pitfalls hidden within the landscape of life, there is little time for true reflection. Yes, when healthy I might occasionally give a peek over my shoulder at where I'd been, usually at times of joyful triumph or remorseful melancholy, but even at my most introspective I was far too immersed in the riptides of life to make sense of the complicated and often twisted and dented arc of my own existence. The emotions of the moment clouded such backwards glances, the past most often viewed as a kaleidoscopic jumble of my own history filtered through the realities of the present and my expectations of the future.

Those of us who the fates do lead to stumble onto the landmine called chronic illness are suddenly handed not yet another of life's many chapters, but a Part Two, a sequel of sorts, the lead actor plucked from familiar surroundings and dropped onto an alien stage. From this new vantage point, after the smoke clears, the rubble settles, and the ringing in your ears subsides, the life previously led can literally be examined as a finished product, complete in and of itself, disconnected in so many ways from this new and strange reality.

In some respects, the first few months of being on disability were almost akin to attending my own funeral. The life that I had known was over and drifting farther into history with each passing day. Now removed from it, I could view my past as a whole, a Rubik's cube that could be twisted and turned and almost made sense of. I could tease it apart and dissect it, isolate the many intricate and sometimes subtle connections between its many moving parts, and then carefully mull them over and gradually make an attempt at understanding. Eventually, I found that much wisdom could be extracted from the remains of the old me, or, more correctly, the remains of all the me’s I'd ever been.

One should be careful not dwell too long in the past, because it's very easy to get lost there and waste too many of the precious moments that make up the now. But the lessons learned from examining one's own history can be immensely valuable, and can serve as a textbook for making the most of the present.

In the Tarot, every deck contains the dreaded death card, a harbinger which is actually not so much a symbol of physical death but of the end of one phase of life and the beginning of another. Thus too the moment of diagnosis is an end but also a beginning. Despite the very real hardships and anxieties that come bundled with illness, this new beginning need not be one of unending misery, devoid of happiness and contentment.

Everybody's path to contentment is different, and after many years of seeking, I was surprised to find, from my new and uncomfortable perch, that one of the best ways to identify my own was to objectively examine my past, mindfully recognizing those elements that brought me joy and those that fueled disorder and discontent. By zeroing in on the diverse personas I had adopted at different junctures in life, with effort I found I could embrace and incorporate those I liked and respected, and discard the elements of those who I wished I'd never been. I finally understood that both joy and discontent are rooted deep within myself. Though external elements may trigger such feelings, the ability to feel them are entirely self-contained, and with effort can be controlled.

Within a single lifetime we all live many lives and play many parts. Suddenly facing chronic illness may force us to let go of one set of selves, but affords us a unique opportunity at redefinition, a chance to utilize the boundless wisdom we've gained by simply living but which we rarely stop to tap into, and to thus discover the true heart within. Every end is a beginning, and even if that new beginning has been forced upon us, and is filled with terrible unknowns, it is a chance at self-discovery. If you choose to take it, even tremendous misfortune can offer the occasion to be a better you than you have ever been before.

Kibbles and Bits

Okay, so this is just another in a series of "Bits and Pieces" posts, in which I provide a list of various shiny objects that have caught my attention at some point in the recent past. I just hate the conformity of having a long series of posts entitled "Bits and Pieces", so I hope you'll put up with my attempts to come up with variations on the theme. As a matter of fact, if any of you have any ideas for better titles for these kinds of posts, please feel free to leave them in the comments section.

I sure hope I don't get sued by the Kibbles ‘n Bits pet food company, as it is a copyrighted name. But just let the bastards try it, it will be a good chance to play the MS card ("Gee, I'm sorry Mr. Judge, but I have this brain disease, see, and…"). Incidentally, if you do have a dog, and you love the pooch, please don't feed it crap such as Kibbles ‘n Bits. Most commercial dog food is made of things you'd rather not know about and is largely responsible for the rise in cancer seen in household pets, which is epidemic these days. Instead, go with all-natural products, also sometimes called "human grade", such as those made by Wellness (click here) or Old Mother Hubbard (click here). When my dearly departed Stella (that’s her in the picture) was still with us (click here), we switched her from commercial dog food to the all-natural stuff on the advice of our veterinarian, and the difference in her overall health and demeanor was almost instantaneous, night and day. The food may cost a little bit more, but you'll save money on veterinarian bills in the long run…

Okay, now that I've veered completely off course, on with the show…

• A big thank you to everyone who listened to my interview with Karen Gordon this past Tuesday night. If you missed it, Karen has posted an excerpt on her blog (click here). The interview lasted about one hour and 45 min., well over the originally planned one hour (mostly because there were lots of good questions, and also because I'm a blowhard). I'm happy to report that the interview received lots of very positive feedback, but when I listened to the excerpt all I heard was some guy saying "um" and "you know" an awful lot. Because, um, I guess , you know, I'm unaccustomed to public speaking and stuff.

• "Musings of a Distractible Mind" is a fascinating blog written by a real-life doctor. His post "A Letter to Patients With Chronic Disease" (click here) is an incredibly honest piece of writing, and one that I think is a must read for all patients dealing with chronic illness. In the piece, Dr. Rob explains that many doctors are literally scared of the chronically ill, and goes on to tell us why. Overall, "Musings" is a captivating and valuable blog, giving patients a rare peek at what it's like to be on the other side of the stethoscope.

• Here's a small way all of my Canadian friends can do a little something to help further the CCSVI cause. This pro-CCSVI online petition (click here) is directed at Canadian Minister of Health Leona Aglukkaq, who recently announced the Canadian federal government's decision to not fund treatment studies of the liberation procedure. It should take about 10 seconds to fill out the petition, so if you are Canadian, please click the above link to let the powers that be know that you don't approve of their recent actions, or, more correctly, their inactions…

• One thing that is sure to make some of the staunchest CCSVI advocates' heads explode is the suggestion that some of the benefits described by patients after undergoing the Liberation Procedure may be due to the placebo effect. The truth is that the placebo effect is a very strong and poorly understood phenomenon, and one which can't be easily dismissed in any legitimate medical investigation. This article (click here) describes a trial involving Parkinson's patients, during which all of the patients involved in the trial received brain surgery. Some of the patients, though, received a sham procedure, in which they underwent the exact same extremely invasive surgery as the other test subjects, only the medication being tested was not injected into their brains. Incredibly, many of the patients who received the sham procedure experienced tremendous improvement in their symptoms, so much so that the medication being trialed was deemed ineffective, because those receiving it experienced just about the same level of benefit as those not receiving it.

  Researchers are now learning that the placebo effect is not simply the function of a patient's imagination. The effect is more pronounced in procedures in which the stakes are high, and actually appears to cause the brain to release chemicals directly involved in the disease process. In other words, the placebo effect may actually have some verifiable and beneficial medical significance. Truly fascinating stuff. The article also discusses the morality involved in the use of sham procedures, and also includes some patient perspective. In the recently announced Liberation Procedure treatment trials to be conducted in Albany, New York, (click here) sham procedures will be used to test the effectiveness of the treatment.

  Edited to add: based on some of the comments left by readers, it appears that some are taking this post to mean that I'm suggesting the placebo effect is responsible for all the benefits seen in patients who have undergone the Liberation Procedure. I am absolutely NOT saying this. I believe that many patients who undergo CCSVI treatment experience very real and very long lasting benefit. The placebo effect, though, must be factored in when trying to view the picture as a whole, as is evidenced by the above linked article.

• Many readers have e-mailed me asking for recommendations on good books about Multiple Sclerosis. In all honesty, I really haven't read many books on the subject, instead heavily depending on the Internet to do my MS research and learning. My friend Mitch, who writes the terrific blog "Enjoying the Ride", has read quite an assortment of MS and disability related books, which he reviews in this very valuable post (click here). While you're over at "Enjoying the Ride", be sure to poke around and check out some of his other posts, as Mitch's blog is chock full of extremely interesting and well-written material.

Well, that's it for now. Oh, one more thing. I took a tumble the other night (cane slipped, wobbly legs failed me, and I fell down and went boom), and thankfully Karen was home to help me struggle back into my wheelchair. If she wasn't home, I'd have been stuck on the floor ad infinitum. So, please, if you have trouble walking, be sure to always carry a cell phone with you, just in case you find yourself kissing the hardwood (or carpet, or tile, whatever the case may be). And don't worry, I'm no worse for the wear, just some bumps and bruises.

Have I ever mentioned that MS sucks?

Live Interview Time Changed to 9:30 PM This Tuesday Night

Image by Leo Reynolds via Flickr

The starting time for my interview in the "MS Voices" series, conducted by Karen Gordon, has been changed from 8 PM to 9:30 PM, New York time, this coming Tuesday, September 7. You can (click here) for a handy-dandy webpage that will convert the starting time to its equivalent in your own time zone. For those of you who have already registered, you should receive an e-mail confirming the new time. For those readers who haven't yet signed up, you can do so by (clicking here).

During the registration process, you can submit a question for me, and if you've been good this year, Karen will ask it. Please, nothing too hard, as I'm as sharp as an egg.

You'll have the option of listening to the interview via the Internet or on the phone, and if you choose to listen via telephone, you'll likely have the chance to join the show and ask me a question directly. I can only imagine the thrill.

Some Very Bad News for CCSVI Advocates… Followed by Some Very Good News…

Image via Wikipedia

But first, a little shameless self-promotion. Next Tuesday, September 7, at 8 PM EST, I will be interviewed live on the Internet as part of a nine week series entitled "MS Voices". I was very flattered to be asked to participate by the host of the series, Karen Gordon (The Self-Healing Coach), as some very impressive names are in the interview lineup, including Scott Johnson (founder of the Myelin Repair Foundation, one of my favorite MS nonprofits), Ashton Embry (founder of Direct-MS, a nonprofit MS advocacy organization), and Stuart Schlossman (founder of MS Views and News, an invaluable resource of MS info with worldwide reach), among a bevy of other very notable people in the MS universe. Truly, I'm delighted to have been included in this group, and I only hope I can hold my own amongst such an all-star lineup. Please register for the live netcast, and tune in next Tuesday night, if only to hear whether or not I make a complete ass of myself (click here to register).

Okay, on with the show…

On Thursday, August 26, the Canadian Institutes of Health Research (CIHR), in collaboration with the MS Society of Canada, convened a meeting of medical experts to determine whether or not the Canadian federal government should fund treatment trials of the CCSVI Liberation Procedure. Thus far, the MS societies of the US and Canada have divided $2.4 million worth of research funding up between seven CCSVI research projects, none of them directly testing the efficacy of The Liberation Procedure, the catheter venogram technique used to open up the blocked veins of patients found to have the venous abnormalities and resultant disruption in blood flow that have come to be called CCSVI.

Treatment trials of the procedure would clearly be the quickest and most effective way of determining the efficacy of the technique, and by doing so, the merits of the entire CCSVI hypothesis. To date, thousands of patients (estimates range from 1000 to 3000) have undergone the Liberation Procedure, many of them spending many thousands of dollars and traveling thousands of miles to foreign clinics for a chance at relieving their debilitating MS symptoms and the insidious progression of the disease, as very few doctors in the US (and none in Canada) are doing the procedure. Anecdotal evidence suggests that, for a sizable proportion of patients, the Liberation Procedure does seem to offer benefit, sometimes to a dramatic degree.

During the procedure, balloons or stents are used to open the blockages in patients' jugular and azygous veins, blood vessels that drain the central nervous system. While there is some acknowledged risk in the use of stents, and some complications have arisen due to their implementation, when balloon venoplasty is used alone it has proven to be a remarkably safe, minimally invasive procedure. Patients usually undergo the procedure with little or no sedation, and many leave the hospital only hours after the procedure is finished. Admittedly, the technique is not without its faults, as many patients see the blockages in their veins return some weeks or months after undergoing "liberation", a problem referred to as restenosis.

Earlier this week, the CIHR announced its verdict regarding treatment trials of the Liberation Procedure: "There was unanimous agreement from the scientific experts that it is premature to support pan-Canadian clinical trials on the proposed Liberation Procedure" (click here for announcement). The decision outraged many MS patients and CCSVI activists, this writer included. The CIHR released a 10 page document outlining the evidence presented and the reasoning behind its decision (click here for document).

I find it absoutely unconscionable that the simplest and most direct method of testing the CCSVI hypothesis has been continuously blocked, in large part by individuals and organizations entrenched in and enriched by the standard narrative that MS is an autoimmune disease that is strictly neurologic in nature. The autoimmune theory has held sway for over 20 years now, and has yielded, after countless research man-hours and billions upon billions of dollars spent, a handful of drugs that either modulate or suppress the human immune system. These drugs have been demonstrated to reduce MS relapses and the amount of lesions shown in MRI imaging in some, but by no means all, of the MS patients taking them. Ranging from obscenely to hideously expensive, the available MS drugs do absolutely nothing to address the underlying cause of the disease, and the continued emphasis on autoimmunity has effectively stopped most research seeking to find that cause.

One of the primary reasons cited for not approving immediate trials on the Liberation Procedure were alleged safety concerns for the patients involved. This reasoning is almost laughable. As I alluded to above, when confined to balloon venoplasty, we have thus far seen no major complications, and very few minor ones. These same experts so concerned with patient safety routinely prescribe drugs to those under their care that carry potential side effects the stuff of which nightmares are made.

The CCSVI hypothesis offers a radical departure from standard MS dogma. It is so "outside the box" that many neurologists seem to shun it reflexively, unable to even entertain the idea that MS might actually be of vascular origin, often treating proponents of the idea with derision and barely disguised mockery. A turf war has ensued, pitting neurologists against interventional radiologists (the specialists who perform the Liberation Procedure); tragically, it is the patients that are caught in no man's land, desperately seeking a cure, and finally finding a reasonable explanation of their disease that allows them, at long last, some hope.

On pages 9 and 10 of the document put out by the CIHR (click here) is a list of all of the experts who participated in making the decision to not fund treatment trials. A little googling should easily turn up e-mail addresses and phone numbers for most if not all of these experts. I'm not usually one to advocate open insurrection, but in this particular case I believe that these people should hear from the human beings their decision has impacted, which includes literally every single MS patient in the world, each of whom stand to benefit if CCSVI proves to play a part in the MS puzzle. I urge people to contact these luminaries, and in very polite, rational, but no uncertain terms let them know the misery that comes with waking up each day with MS, and the potentially calamitous effect their decision to delay CCSVI treatment trials has had on them and their loved ones.

Let me be absolutely clear, I am not promoting the harassment of these individuals. Contact with them should under no circumstances be in the form of epithet filled irrational harangues, but rather in personal stories of desperation, disability, and hopelessness. I am calling for advocacy, not agitation. I cannot stress this point enough. Expressing unfocused anger, resentment, and hostility will only make these folks dig their heels in harder, and will set back efforts to bring CCSVI into the mainstream. I am also very specifically pleading against the demonization of the staffers of the MS Societies, who work diligently to assist in the daily battles against the MS scourge that patients must endure. The staffers of these societies have nothing to do with the decisions made by the scientific panels and board members of these organizations. They are conscientious and well meaning, and it's not their fault that those above them seem to have their heads firmly implanted up their own backsides on the issue of CCSVI. So please, direct your frustrations at those responsible, a list of which is thoughtfully provided in the back of the CIHR document, not at those good souls who staff the MS societies.

Okay, enough with the bad news, here's some terrific news. A large-scale treatment trial of the Liberation Procedure has been approved here in the US. Dr. Manish Mehta, working out of Albany, New York, has been given approval to begin a 600 patient trial, scheduled to start in August 2010 and finish in September 2011 (click here for details). The trial will split patients into two groups, one which will get the liberation treatment, and the other a "sham" procedure. Comparing the progress of two groups will reveal whether or not the Liberation Procedure does in fact improve the condition of MS patients, and the degree to which the placebo effect is in play. Following just days on the heels of the discouraging news out of Canada, this approval seems almost heaven sent. The buzz in the CCSVI world is that a second approval is pending, with perhaps even more to come after that.

Of course, these trial approvals do not prove the CCSVI hypothesis, but at long last we will be on the road to discovering, sooner rather than later, using accepted, objective scientific standards, whether or not the Liberation Procedure actually provides relief from MS symptoms. These treatment studies will not answer the vast galaxy of issues swirling around CCSVI, but they will address the single most important question that patients suffering from the son of a bitch we call MS want answered: Does the opening of blockages in the veins that drain the central nervous system improve the physical well-being of Multiple Sclerosis patients?

We wait with bated breath for the answer…