Back Home, Safe and Sound

First of all I'd like to thank everybody who left comments and sent e-mails wishing me their best, offering their support and encouragement. I don't have the words to express how much I appreciate the comfort sent my way, and I am continually astounded that my silly little blog has touched the lives of so many.

I'm back home, safe and sound, after undergoing the CCSVI angioplasty procedure, which lasted longer than I expected, almost 5 1/2 hours, and discovered several abnormalities within my CNS vascular system. I'll detail these abnormalities in a later post, when my own understanding of what was found is more clear.

For now, I'll just say that the abnormalities that were discovered were not able to be fully treated at this time. Dr. Sclafani, who performed the procedure, is going to consult with a variety of experts to determine the best course of action to take moving forward.

As for the procedure itself, it really wasn't painful or even all that that unpleasant, just long and tiring. Not that I'd recommend it for a recreational activity, but the degree of anxiety I felt before the procedure was out of proportion to the actuality of the event.

Again, I'd just like to thank everybody for their wonderful show of support. I will post a detailed explanation of the findings after I consult further with my doctors, and can give an entirely accurate account. I expect I'll be able to do this within the next few days. There is surely enough misinformation on the Internet regarding CCSVI and the procedures used to address it without my adding to the confusion.

Again, thanks everybody...

Well, I'm Going for It - Having CCSVI Procedure This Wednesday

Image by nats via Flickr

This Wednesday, March 10, I'm scheduled to undergo a diagnostic venogram, looking for stenosis (narrowing) and/or other abnormalities in my azygos and jugular veins. If any such anomalies are found, they will be addressed via a balloon procedure. The venogram itself involves feeding a catheter from a vein in my upper thigh, through my vascular system, to the veins associated with the central nervous system. In the parlance of CCSVI, this is known as the "Liberation Procedure". (For info on CCSVI, click here)

The procedure will be performed at Kings County Hospital in Brooklyn, New York, by Dr. Salvatore J. A. Sclafani, the Chief of Radiology of the facility. He's also Professor and Chairman of Radiology at the SUNY Downstate Medical School. Dr. Sclafani has a long history of innovation in the field of interventional radiology, and is excited to be at the vanguard of CCSVI research and treatment. He attended the recent CCSVI conference in Hamilton, Ontario, along with all of the acknowledged experts in the field, including Dr. Paolo Zamboni, who developed the CCSVI hypothesis. Dr. Sclafani continues to regularly consult with Dr. Zamboni.

I'm hopeful that the procedure will prove to be of benefit, but I'm also trying to keep in mind the realities of my situation. It's important to understand that my illness is highly atypical. There's much question about my diagnosis, and it's quite likely that what is causing my neurodegeneration is not MS.

The neuro immunology team at the National Institutes of Health has examined me extensively, and has concluded that my disease does not fit any of the diagnostic criteria that are required to label my condition Multiple Sclerosis. They aren't sure what I do have, but one of the possibilities they've talked about is that my disease may be primarily vascular in nature, since a CT venogram done this summer did reveal stenosis very high up in my left internal jugular, unfortunately in a spot that will be difficult to fix. However, Dr. Zamboni has recently expressed the opinion that stenosis high in the jugulars is often secondary to stenosis found lower in the vein, and that addressing the lower stenosis often opens up the upper problem as well.

My primary neurologist here in New York is less convinced that I don't have MS, but agrees that whatever disease afflicts me is highly atypical. I have only one significant lesion, at the very base of my brainstem, which has not changed in size or appearance in the nine years that I've been getting regular MRI imaging. My spinal fluid is clear of O-bands or other evidence of inflammation, and my clinical presentation is at odds with the results of my diagnostic testing. I do have evidence of "autoimmune activity", such as Hashimoto’s Thyroiditis, and some unexplained episodes in my medical history.

As a result of this lack of clarity regarding my diagnosis, Dr. Sclafani and I are unsure as to what Wednesday's venogram will reveal, or that addressing any problems that do show up will have any beneficial impact at all on my condition. If I don't have MS, then the CCSVI theory doesn't even apply to me. However, my disease progression continues unabated, and since I already know that I have stenosis in my CNS venous anatomy, it makes sense to further investigate the possibility that vascular problems may be playing a part in my illness.

Thanks to the diligence and hard work of a very small group of grassroots activist MS patients, who relentlessly sought out physicians who would pick up the CCSVI gauntlet, Dr. Sclafani agreed to look at the available evidence, and upon doing so became convinced that the CCSVI theory has merit and warrants serious investigation. After much study and consideration, he's recently begun performing catheter venogram procedures on MS patients, and has found a high correlation between MS and CNS venous abnormalities. He's addressed these abnormalities using balloon angioplasty, to gently force open the azygos and/or jugular veins of his patients.

I first met with Dr. Sclafani about six weeks ago, and he devoted over three hours to consulting with my wife and me. After first being examined by the hospital’s neurologist, I sat down with Dr. Sclafani to go over the results of the CT venogram that had been done this past summer. The good doctor carefully examined dozens of the images contained in the scan, explaining what he saw in each one to Karen and me.

Since my diagnosis, I've met with some of the most renowned doctors in the land, but have encountered few as empathetic and considerate as Dr. Sclafani. Rather than being talked to, I felt I was being talked with, and Dr. Sclafani responded to all of my concerns and unhesitatingly voiced a few of his own. He was scheduled to go to the Hamilton CCSVI symposium about a week after my appointment with him, and we decided to put off making any treatment decisions until after he attended the symposium and had a chance to consult with the assembled doctors.

Our consultation lasted far longer than had been anticipated, and the doctor’s staff thoughtfully had a car service waiting to take my wife and I home when it ended. Dr. Sclafani personally saw my wife and me out of the facility, then helped me into the car. Other than my primary neurologist, Dr. Saud Sadiq, who is also quite exceptional, I don't know many other doctors who would exhibit such down to earth humanity.

After the Hamilton symposium, Dr. Sclafani contacted me and told me he thought we should move forward with the venogram. His assistant Holly attentively handled all the arrangements, and this past Thursday I went back to Kings County for pre-op testing. Thus far, every step of this process has been handled in a professional, timely, and even (gasp!) cheerful manner. Hopefully, the actual procedure will go just as smoothly...

If I were recently diagnosed, or my symptom profile was more mild, I think I'd wait to see what the coming wave of CCSVI research reveals before undergoing this procedure. The speed with which my disease is progressing, though, makes it not too hard to envision the Wheelchair Kamikaze becoming the Mattress Kamikaze in the foreseeable future, and I'm determined to do everything I possibly can to cut that eventuality off at the knees. Upon my diagnosis, just about seven years ago, I vowed that if this son of a bitch was going to take me down, it was going to take me down fighting, all guns blazing, both fists bloodied, and with bite marks firmly implanted in its skull. This is war, and surrender is not an option.

For those interested in contacting Dr. Sclafani, please e-mail his assistant Holly Barr (ccsviliberation@gmail.com).

Alternative Treatments For MS (LDN and Antibiotic Regimens)

Image by eli santana via Flickr

While CCSVI (the "vascular theory" of MS) has recently grabbed the lion's share of attention as an alternative approach to understanding and treating MS, there are some older "outside the mainstream" theories and treatments that also deserve some attention. While the list of purported MS treatments is long and sometimes quite bizarre (including everything from bee stings to ingesting colloidal silver), there are two controversial treatment approaches that do stand out, both of which have some strong anecdotal evidence to back them up. These two are LDN (Low Dose Naltrexone) and long-term antibiotic therapy.

LDN-Low Dose Naltrexone uses a long approved drug that was originally intended to help heroin and opium addicts kick the habit. In very low doses, the drug Naltrexone is said to have immunomodulating properties, and the Internet MS forums are peppered with patients who claim that LDN has helped relieve their symptoms and halt the progression of their disease.

Naltrexone blocks the opiate receptors in the brain, and is therefore useful in treating people addicted to heroin and other opium-based narcotics. The drug is typically used in doses of 50 mg for the treatment of addiction. When used in much smaller dosages, 3 mg to 4.5 mg, many MS patients report sometimes dramatic benefits from the drug. Patients suffering from other autoimmune diseases, such as Crohn's disease and Lupus also report symptom improvement and disease remission resulting from the use of LDN.

The use of LDN has been shown to increase endorphin production, and critics have said that this increase in endorphins ("feel good" chemicals produced naturally in the body) helps relieve patient's symptoms without actually addressing the core disease.

Unfortunately, Naltrexone is off patent, and as is the case with all off patent drugs, very little money is available to fund full-fledged scientifically valid trials, simply because there is not much profit to be made from drugs that can be bought cheaply as generics. Several small studies have indicated possible benefit. The results of a phase 2 trial on the safety and efficacy of LDN as a symptom relief drug for MS patients was recently released (click here), and "suggests that LDN is safe and may have positive effects on the mental quality of life in people with MS; but no effect on a patient's physical quality of life". I know that there are many patients taking LDN that would vociferously disagree with these findings, and insist that the drug has indeed positively impacted their physical condition.

I tried LDN several years ago, and derived no benefit from it. My disease presentation is very atypical, though, and I hesitate to draw any conclusions based on my experience alone. Since I now take narcotic painkillers to tolerate the avascular necrosis I developed as a result of steroid use, I'm no longer a candidate for LDN therapy. If I weren't on the painkillers, though, I'd probably give the drug another try, based on the positive reports that continue to filter in. For more information on LDN, click here.

Antibiotic Therapy-The use of long-term antibiotic therapy to treat MS is based on the theory that an infectious agent is responsible for Multiple Sclerosis. The two infections most often linked with MS are Chlamydia Pneumonia, and the Lyme disease bacteria B. burgdorferi.

Chlamydia Pneumonia is carried by a large majority of the adult population, and is usually thought to be harmless. Researchers at Vanderbilt University, though, in addition to British physician Dr. David Weldon, have linked CPN with MS in several studies, and have developed a combination antibiotic protocol, taken over a long period of time (usually 12 to 24 months) to combat the infection. This "Vanderbilt Protocol" has gone through many modifications, and is usually taken in conjunction with a wide variety of vitamins and supplements meant to enhance the effectiveness of the antibiotics and reduce any deleterious effects such long-term therapy might have on the body.

Many patients who have undergone the rigorous combination antibiotic protocol report vast improvements in their condition, with some even claiming dramatic improvements in disability levels and complete remission of the disease. Unfortunately, these reports remain strictly anecdotal, as no long-term blinded studies have been conducted to test the treatment protocol.

I tried a Combination Antibiotic Protocol about four years ago, and failed to see any benefit from it. Again, I hesitate to draw any conclusions based on my experiences, because of the atypical nature of my disease. For more information on chlamydia pneumonia, its links to MS, and the combination antibiotic protocol, please visit CPNhelp.org (click here).

Chronic Lyme disease (a tick borne infection) has also been implicated as a Multiple Sclerosis suspect. While quite controversial, some physicians and researchers claim that many cases of MS are in actuality misdiagnosed instances of chronic Lyme infection. It is known that the Lyme bug (B. burgdorferi) can attack the central nervous system, and can cause MS like lesions to show up on MRI scans. Some researchers have found evidence of B. burgdorferi in the spinal fluid and nerve tissue of MS patients, furthering the argument that at least some MS is actually Lyme disease. Standard tests for Lyme can often be inaccurate, and several specialized testing labs have developed protocols much more sensitive to detecting evidence of chronic Lyme infection in patients.

Like chlamydia pneumonia, chronic Lyme disease is treated with long-term antibiotics, in the case of Lyme often given intravenously. For info on Lyme disease misdiagnosed as MS, click here. For general info on Lyme disease, click here.

My personal take on this is that these different theories may in fact all be correct, for different subsets of the MS population. Given the heterogeneous nature of MS, I believe it's likely that what we call MS is probably a collection of related diseases that share common characteristics, each of which might respond to different treatments and therapies. The wide disparity in the effectiveness of current MS treatments from patient to patient could be explained by the fact that MS patients are not all suffering from precisely the same disease. MS is a complex beast, and it could very well be that infectious, genetic, toxic, and vascular issues all play a role in the Multiple Sclerosis spectrum. Unfortunately, there is still much to be learned...

Present Imperfect

Image by ziggy fresh via Flickr

If you don't look too closely, the physical me from my pre-diagnosis days pretty much looks the same as the physical me now; I still have my full complement of limbs and appendages, though only half of them still function, and even those are being trampled on by the incessant march of MS. Upon closer inspection, my very weak right arm and leg have become noticeably thinner, and are often held at strange angles, due to the spasticity and weakness brought about by the disease. So I can't really say the effects of the illness are all that invisible.

Still, if I take the time to straighten out all of the stiff and weak parts (yes, the magic of MS, abracadabra, can make limbs both stiff and weak), and pose myself just so, when standing still in front of a mirror, the guy looking back at me is just about indistinguishable from that healthy fellow I used to know about seven years ago. Of course, the slightest movement shatters this illusion, but somehow I find it comforting to know that I can still approximate "normal", if only for a moment or two, even if it takes a very abnormal amount of effort to do so. Knowing that there is a good chance that I'll no longer be able to pull off this parlor trick at some point in the future makes my ability to do so now all the more precious.

The changes brought on by MS leave me more and more defined not by what I can do, but by what I can’t. As my "can't do" list grows, constant adjustments need to be made, the most difficult of which aren't changes in physical routines, but revisions in attitude, and in the very definition of "self". Who is this new me, this clumsy creature who needs 30 minutes to put on socks, pants, and shirt, and who can no longer negotiate a childproof cap?

We live in a society that celebrates individual achievement, whose very founding document is a "Declaration of Independence". American mythology is stocked with figures that embody the ideal of independence; sports heroes, legendary entrepreneurs, and historical characters who pull themselves up by their bootstraps and battle their way through every imaginable adversity until with sheer guile and guts they eclipse mere success and ascend the very pinnacle of absolute triumph.

We don't generally celebrate folks who can't cut their own pork chop, or button their own shirt. Yet that's just where I now find myself, very often in situations where the mind is willing, but the body is unable. The physical challenges posed by MS come bundled with the mental hurdles the disease erects. Pride and ego are tremendous obstacles, sometimes even more so than an inability to hold a pen. As my disease has progressed, I've found myself increasingly incapable of doing everyday tasks, the kinds of things most people have the luxury of taking completely for granted. Try opening a carton of orange juice or a bag of chips with only one hand. Good thing I still have my teeth, because they certainly do come in handy (pun intended).

Yet, despite my increasing struggles, for a long time I held tenaciously to that ideal of total independence, an overgrown cranky toddler screaming to the whole fracking world, "I want to do it myself!" Caught in a vicious cycle, the more I struggled with some task, the more frustrated I became, which made me all the more resolute that I would do the damned thing myself.

My wife Karen would often watch from the sidelines, silently sensing the importance of allowing me to come, in my own time, to the realization that asking for help would not diminish me in her eyes or the eyes of the world at large. When finally my level of aggravation would hit the red zone, and I'd look reluctantly in her direction, she'd be there to save the day, always in a good-humored and affectionate way that instantly transformed my raging frustration into gentle gratitude.

Overcoming pride, and a lifetime of indoctrination into the tribe of independence, has been one of the greatest obstacles MS has thrown my way. To admit need, to make a declaration of dependence, requires both tremendous strength and a final acceptance of your situation. It's an admission of vulnerability in a world that seems to delight in dismantling the vulnerable, and a recognition that the situation, dreadful as it may be, has become your new reality.

Yet, once the acknowledgment of need is made, a transformation of sorts takes place. The interdependence that we all have on one another becomes clear and unthreatening, and the understanding dawns that welcoming the offer of a helping hand enriches both the helper and the one being helped. Accepting the assistance of a loved one, friend, or stranger not only makes life easier on me, it allows the person offering their assistance the chance to exercise their humanity and to feel good about themselves. In the parlance of corporate psychobabble, it's a classic win-win situation.

I decided, finally, that asking for help simply keeps one from being helpless, and does not represent capitulation or weakness of character. Obstinately struggling with the lid of a jar or with the clunky zipper of a winter coat is just a waste of time, and the biggest lesson that MS has taught me is that time is far too precious a commodity to waste. I can't say I'm ready to spend my life relying on the kindness of strangers, but I can no longer afford to go about avoiding such kindness, either. When all is said and done, we're all in this thing together...

A Little Housekeeping

Well, it appears for the moment that the recent storm of CCSVI related news has reached its climax with the release of the initial Buffalo study results, so I expect things here at Wheelchair Kamikaze will return to the relative normalcy (and I use that term loosely) of the pre-CCSVI uber-excitement days.

Of course, I'll keep reporting and commenting on whatever new CCSVI tidbits come along, but, now that we are emerging from the tempest, I'm planning on getting back to posting more of my philosophical blatherings about life in the gimp lane, some additional psychobabble mumbo-jumbo synthesizing Eastern thought with wisdom gained at the gaming tables of life with the pleasures of progressive neurodegeneration, and general news and observations regarding the goings-on in the world of MS.

I also have some raw Wheelchair Kamikaze video footage sitting around waiting to be edited, so there will be some new Wheelchair Kamikaze videos coming soon (I promise), and I'll take some wheelchair photo safaris through the beautifully bleak winter landscape of Central Park over the next few weeks.

For those who care to keep note of such things, I've also separated out the "Popular Posts" selections in the left column of the blog into CCSVI related and general interest posts, because the previous automated list was getting overwhelmed with the CCSVI related stuff. I've also added an interesting little gadget that you'll find if you scroll down the page that shows a little map of the world with red dots signifying recent and current visitors to Wheelchair Kamikaze. If you click on the little map, it will open up a larger Google map that places little flags over the global position of each visitor. Clicking on each little flag reveals the exact city or town of the visitor, and also the page of the blog they are looking at. Click again, and Google will thoughtfully provide you with the reader’s genetic code and darkest personal secret. Okay, I made that last bit up, but at the very least, it's a fun way to kill about 25 seconds...

NMSS Video on Ampyra, New MS "Walking" Drug

Image by Hljod.Huskona via Flickr

The National Multiple Sclerosis Society has released a video featuring the noted neurologist Dr. Patricia Coyle, answering questions on Ampyra, a recently approved drug that's meant to increase the mobility of MS patients by increasing the conductivity of damaged nerve cells .

I wrote about this drug a few weeks ago (click here), noting that it's a time released version of 4-AP, a compound that has been used to treat MS symptoms for decades.

The following video covers all of the pertinent information about Ampyra, but doesn't go into the one controversial aspect of the new medication, its cost. The wholesale price of Ampyra is over $1000 per month, while the same amount of the generic drug that it is derived from, 4-AP, costs about $30.

One reader of my previous post did leave a comment that they participated in the Ampyra trial, and found the drug to be much more effective than 4-AP. That's welcome news that would make Ampyra a valuable tool for those struggling with MS. I certainly hope this info is correct, considering the price of this drug. If anyone out there has any information on how Ampyra differs chemically from 4-AP, I'd appreciate your passing it on...

Thank You

Well, it looks like Wheelchair Kamikaze has won the medGadget.com "Best Patient’s Blog" contest. (Click here for contest results)

A tremendous and heartfelt thank you to all who voted. Your comments and e-mails have inspired and humbled me ever since I started this blog about a year ago, and I can't imagine that any help I might have provided the readers of Wheelchair Kamikaze could even amount to a fraction of the encouragement your interaction has given me.

Hopefully, the coming year will bring dramatic advances in the treatment of MS, and I'll do my best to provide commentary, personal reflection, and the occasional smile.

Thanks again...

CCSVI, Already a Success...

This month, CCSVI exploded onto the MS radar screen, as the Canadian news media picked up on the story and the University at Buffalo released positive results from the preliminary stage of its ongoing imaging study (click here for more info). While the news that Multiple Sclerosis may in fact be of vascular origin has the potential to fundamentally change our understanding of the disease, the CCSVI story contains other vital lessons and implications for patients, researchers, and doctors alike.

Only 10 months ago, the buzz about CCSVI was barely a murmur. The research of Dr. Paolo Zamboni, founder of the CCSVI theory, was largely unknown, and the concept that MS might be a vascular disease would have been given short shrift by the vast majority of MS researchers and physicians. Remarkably, due to the efforts of a very small group of activist patients, led by the wife of an MS sufferer in California, that quiet murmur has grown into a tremendous roar, and rather than scoffing, even the most skeptical physicians are now being forced to take notice.

The uphill battle to get CCSVI serious attention was truly a grassroots effort, spurred on by patients and their loved ones desperate to find answers that mainstream medicine has been unable to provide. The story of CCSVI is one not only of scientific innovation and medical insight, but also that of the growing discontent that the MS community feels for the current state of MS treatments and therapies. To put it bluntly, the MS the status quo just ain't cutting it.

Upon diagnosis, MS patients are usually advised to go on the first-line MS drugs, the injectable interferons. These drugs leave many of those taking them feeling quite sick after every dose, and clinical trials have shown that they are only effective in about one third of the patients using them. Second line drugs, such as Novantrone and Cytoxan, are immunosuppressive chemotherapy agents known to be toxic, and have potentially fatal side effects. The newer drugs, such as Tysabri, show much greater treatment efficacy than the older drugs, but they too are immunosuppressive, and carry with them the potential for fatal complications, the risks of which appear to increase with the length of time patients continue treatment.

To my mind, despite problematic side effects, the greatest problem with these medications is that they all treat MS by suppressing or modulating the immune system. The fact is that an immune system gone awry is a symptom of MS, a disease whose origin remains unknown. I've used the following analogy before, and it is admittedly crude, but treating MS by suppressing the immune system is like treating a broken leg with painkillers. The symptoms are superficially addressed, but the root cause of those symptoms is ignored entirely. Yes, the current MS drugs can improve a patient's quality of life, and may slow down progression of the disease, but they do nothing whatsoever to address the still unknown underlying mechanism that drives the disease.

The palpable excitement about CCSVI in the patient population speaks volumes to the incredible frustration patients instinctively feel about the current state of MS care, and the desperate need for hope among MS patients. The Internet MS chat rooms and bulletin boards are overflowing with patients that are sick of being sick, and who feel trapped by a medical establishment that seems unable to address their fears and concerns, much less the debilitating illness they are forced to live with every day. They see pharmaceutical companies earning billions of dollars yearly marketing drugs that seem designed more for profit potential than for disease eradication, and doctors whose hands are tied as much by medical dogma as by the lack of treatment options available to them.

The rise of CCSVI should serve as a model of patient self advocacy, and illustrates the absolute necessity that patients educate themselves to the best of their abilities, and use the knowledge gained to intelligently question at a fundamental level the how's and why's of their treatment choices. Without the efforts of a few incredibly diligent and steadfast individuals, the CCSVI theory would still be languishing in the back pages of a few medical journals, and a theory with the possible potential to significantly alter the perception of MS could very well never have seen the light of day.

CCSVI may prove to be the Rosetta Stone of MS, or it could turn out to be just a curious piece in the MS puzzle. Regardless of the eventual outcome, the brave efforts of a handful of advocates have managed to shake up mainstream medicine, and have opened the eyes of researchers to concepts that had been either entirely neglected or never even previously examined.

A tremendous amount of research will now commence attempting to prove or disprove the CCSVI theory, and along the way many important discoveries, some having nothing to do with CCSVI, will undoubtedly be made. Monoliths such as the national MS societies and large-scale research organizations have been forced into action, all due to the hue and cry of a patient population brimming with righteous consternation.

As a community, those affected by MS must keep the momentum building, and actively take part in efforts to spark the flames of discovery. If you have the means, donate to organizations researching and advocating alternative MS treatment options. If you have the time and physical ability, volunteer to help further those efforts. At the very least, speak up to the powers that be and let your voice be heard.

As patients, we must be the straw that stirs the drink. As unfair as it may seem, the burden of forcing the action ultimately falls upon the shoulders of those that will benefit the most from that action. By simply shining a light on the path towards empowering the MS patient population, CCSVI is already a stunning success.

Buffalo CCSVI Study Results Revealed; A Significant Step on the Journey Towards a Cure?

Image by kairin via Flickr

After months of anticipation by the worldwide MS community, the results of the University at Buffalo's CCSVI imaging study were disclosed today (click here for report). While they may not be quite as dramatic as some patients had hoped, the results do show an unambiguous link between the vascular abnormalities known as CCSVI and Multiple Sclerosis. (For those readers unfamiliar with CCSVI, click here)

The Buffalo study of 500 subjects showed that 56.4% of the MS patients imaged suffered from a narrowing of their extracranial veins (CCSVI), while 22.4% of healthy test subjects also exhibited such narrowing. This contrasts markedly with the over 95% to 100% correlation found in the smaller unblinded studies previously reported on by the founder of the CCSVI theory, Dr. Paolo Zamboni, who also found no evidence of such abnormalities in healthy control subjects. There were several additional small studies done elsewhere that also had reported a CCSVI-MS correlation of over 90%.

All participants in the Buffalo study underwent ultrasound (Doppler) scans of the head and neck, with some also being imaged with MR venograms. Of the subjects studied, 10.2% were borderline for CCSVI, which allows for some variance in the interpretation of the final numbers.

Upon first look, the much lower correlation between MS and CCSVI shown in the Buffalo study when compared to previous studies may seem disappointing, but in my opinion the less dramatic numbers may actually give the CCSVI theory greater scientific credibility.

MS is an extremely heterogeneous disease, meaning that the symptoms and clinical presentations exhibited can vary widely from patient to patient. This has led some researchers to conjecture that what we now call Multiple Sclerosis may in fact be a collection of different maladies that share common symptoms and markers. This could explain the wide variance in effectiveness seen in the current arsenal of MS treatments.

Furthermore, the diagnosis of MS is an inexact science, and in any large population of MS patients, as many as 10% to 15% could be misdiagnosed. The list of diseases that can be mistaken for MS is quite extensive, and some can be almost indistinguishable from Multiple Sclerosis. For a must read, comprehensive discussion of the many diseases that can be misdiagnosed as MS, click here.

Given the tremendous variance seen in MS patients, and the high level of misdiagnosis, the chances of finding any single trait common in upwards of 95% of MS patients is very unlikely. In fact, I participated in a "Natural History of MS" study at the National Institutes of Health, conducted specifically to identify clinically definite MS patients for use in future NIH studies, precisely because the institution was finding that the high percentage of misdiagnosed patients were skewing the results of the MS studies they were undertaking.

Moreover, unlike the anatomy of arteries associated with the CNS, which is well-known and displays uniformity from patient to patient, the CNS venous system is much less understood. Venous anatomy can differ markedly from patient to patient, making it difficult to define exactly what "normal" looks like.

For these reasons, the initial claims of an almost universal correlation between MS and CCSVI raised red flags for researchers when first presented with the CCSVI theory of MS. While these claims sparked tremendous fires of hope in community of MS patients around the world, they simultaneously cast doubt on the validity of the theory among many serious medical investigators.

The trial results released today by the University at Buffalo fall more in line with what would be expected of an MS breakthrough given science's current body of knowledge regarding the disease. While not the eye-popping numbers reported in the previous studies, the 2:1 ratio of CCSVI found in MS patients when compared to healthy subjects is still dramatic and exciting, and should give curious researchers much reason for continued and vigorous investigation of the theory.

If these early trial results findings hold up, the fact that over 50% of MS patients appear to display signs of a striking vascular abnormality raises a host of intriguing questions. Is the abnormality itself directly responsible for the neurologic symptoms and the damage being experienced by these patients, or does it work in concert with other factors to injure the CNS? Conversely, does the mechanism that is wreaking havoc on a patient's CNS also do damage to their vascular system? How does CCSVI fit with other mysteries associated with MS, such as the existence of "MS clusters", and the geographic distribution of MS? How does CCSVI relate to the signs of autoimmunity that are displayed even in MS patients with CCSVI, and what do we make of those patients who don't display signs of CCSVI? Are they suffering from a completely different disease, and is CCSVI simply a component in a much more complex totality?

Furthermore, we can't discount the anecdotal reports of the dozens of MS patients that have already undergone surgery to correct CCSVI, the majority of whom have reported notable improvements in their disease states. The patients who underwent Dr. Zamboni's Liberation Procedure, a type of balloon angioplasty, showed a significant decrease in relapse rates and a general overall improvement in their health status. The same can be said for the majority of patients treated by Dr. Michael Dake at Stanford University, and Dr. Marian Simka in Poland. While anecdotal reports are subjective rather than objective, and therefore not typically suitable for scientific scrutiny, they certainly can't be dismissed offhand, either.

Over the coming months, much intense research will be underway attempting to answer the many questions surrounding CCSVI. This report out of the University of Buffalo is only the first of many to come, and it would be a mistake to draw anything but preliminary conclusions from it. That said, CCSVI continues to intrigue and tantalize us with the possibility that it could reshape our fundamental understanding of Multiple Sclerosis. Unfortunately, patience will be necessary as we wait for further research results, and patience is a commodity in very short supply among people suffering from progressive, debilitating disease.

I urge all MS patients, and those who love them, to continue advocating strongly for further research into CCSVI, and to reach out to healthcare providers and let it be known that the status quo is unacceptable. Research into CCSVI and other "outside the box" theories must be dynamically pursued. Fixation on the autoimmune theory has yielded imperfect treatments but no cures, and in the unlikely event that CCSVI turns out to be nothing but a promising dead end, the time and effort spent researching it may yet yield discoveries that could finally unlock the mystery of MS. We must make our voices heard, and fight as if our lives depend on it. The excitement over CCSVI reveals the widespread discontent with current MS treatment strategies. We must channel that discontent into a force that will not be denied.

Great Resource for MS News and Info

Image by Mr Noded via Flickr

Just wanted to pass along a very valuable resource for anybody seeking the latest MS news and information.

I'm sure there are many out there like me, who hungrily scour the web for whatever pieces of information might help solve the MS puzzle. At least I hope there are many out there like me, as I'd hate to think I'm all alone in my obsession. I don't expect that there are too many others pathologically obsessed with vintage fedoras, or antique New York City postcards (only two examples from my overstuffed portfolio of fetishes, manias, and obsessions), but I imagine that most people affected by MS actively seek out info and opinion regarding the disease.

The mother lode of MS info is "Stu's Views and MS Related News", a weekly e-mail newsletter stuffed with all of the worthwhile MS information gleaned from the previous seven days (click here to register). Stu also maintains a website (click here), and a blog (click here) which is updated several times a day with the latest breaking news.

The MS news feed in the left column of Wheelchair Kamikaze comes from "Stu's Views and MS Related News", and I encourage everybody to take advantage of this very valuable service provided by Stuart to the MS community.

CCSVI NEWS ALERT: Something tells me that some very important information regarding the Buffalo CCSVI study will be released tomorrow morning at 9:30 AM. That same something tells me that everybody interested should check out the Buffalo Neuroimaging Analysis Center's website (click here) Wednesday morning, for what should be some enlightening news regarding the results of the study.

Something else tells me that the Abominable Snowman likes to write his name in the snow when he pees, but that something might just be the frozen the enchilada I ate for lunch.

UPDATE: the Buffalo CCSVI numbers have been released (click here for link). Results indicate that 55% of MS patients studied showed sign of CCSVI vascular issues, while the same type of vascular anomalies were seen in 25.9% of healthy test subjects.

I'll have more to say on this in a post later today, but suffice it to say for now that these results are significant and in-line with what would be expected given what we know about the nature of Multiple Sclerosis.

Videos And Info On This Past Weekend's Hamilton CCSVI Conference

Image via Wikipedia

Well, it appears that this blog is beginning to run the danger of becoming the "all CCSVI, all the time" blog. That's really not my intention, but with new and important CCSVI news coming fast and strong, I feel obligated to keep the Kamikaze faithful updated on the latest and greatest, because CCSVI has the potential to be a Multiple Sclerosis game changer.

I promise, there will be more of the usual Wheelchair Kamikaze photos, videos, and touchy-feely introspective self obsessed Zen laced essays in the coming days and weeks, but until CCSVI is proven one way or the other, I think it's important that I do my part to keep the MS community abreast of the latest news. (Plus, the 12-year-old boy in me really enjoys using words like "abreast" in situations where it would be inappropriate to giggle.)

That said, there was an international meeting of all of the major CCSVI players held this weekend in Hamilton, Ontario (Canada). We should be hearing more about this meeting in the coming days and weeks, and I believe portions of the seminar’s presentations are going to be uploaded to the Internet in video form. In the meantime, we can digest some video and written pieces about it, courtesy of the Canadian news media.

CTV, the Canadian television network that has been on top of the CCSVI story for several months now, today aired an interesting interview with Dr. Zamboni regarding this weekend's seminar and the state of CCSVI research in general (click here for the video). Not only is Dr. Zamboni a medical maverick, but the video clearly shows that he really knows how to rock a scarf...

Also from CTV, this short video overview of CCSVI (click here for video), features Dr. Mark Haacke, a neuroimaging expert who has developed specific MRI protocols designed to identify CCSVI markers. Dr. Haacke also maintains the MS-MRI.com website (click here), which contains a wealth of technical information regarding CCSVI and the imaging techniques used to detect it.

The meeting was also covered in various written accounts, as well. Click here and here for articles on this past weekend's CCSVI seminar.

Dr. Zamboni is scheduled to present his findings to a gathering of neurologists and other medical professionals here in New York on Tuesday morning, February 9. As always, I'll have my ear to the ground (actually, if I had my ear to the ground I would never be able to get up again, so more likely I'll have my ear to the phone), and if anything pertinent comes my way, you'll find it here, on CCSVI Kamikaze...

Buffalo CCSVI Study: Hints of Big News Coming Soon

Image by Reigh LeBlanc via Flickr

As many of you who have been following the CCSVI saga are aware, the University at Buffalo has been conducting an imaging trial to study whether or not there is correlation between Multiple Sclerosis and the vascular abnormalities described in the CCSVI theory. For those who are unaware of CCSVI, you can click for more info here.

The center conducting the study, the Buffalo Neuroimaging Analysis Center (BNAC) has just released a newsletter (click here for newsletter) that, without stating the actual study results, gives strong indications that those results will be extremely positive. To quote the newsletter:

"What I can tell you today is that the preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues, the worldwide press, and individuals like you who are following very closely any developments about CCSVI. We are planning a press release by mid-February, as well as submission of these findings to the American Academy of Neurology annual conference as late breaking news"

As a result of these findings, to BNAC has undertaken the following initiatives:

• A second phase of the study, which will include 500 patients to be imaged using a special Doppler machine developed specifically for CCSVI (click here for more info).
• The center will offer, for a patient paid fee, comprehensive CCSVI venous diagnostic testing. Testing will be offered to price levels, a CORE package for $4500, and an ADVANCED package for $6000. The center is also undertaking negotiations with insurance companies to try to get them to cover the cost of this testing, but doesn't expect any company to cover such testing for at least 18 months. (click here for more info).
• A 30 patient, six-month study that will determine the safety and efficacy of therapeutic angioplasty (click here for more info).
• A future double blinded study of a brand-new therapeutic procedure, which differs from that used by either Dr. Zamboni or Dr. Dake at Stanford University.

Certainly, these initiatives would not be undertaken if the soon-to-be released trial results were disappointing. The results are scheduled to be released sometime in mid-February.

As I have stated before, I'm cautiously skeptical but very optimistic that CCSVI will prove to be a major advance in our understanding of the mystery we now call Multiple Sclerosis. I'm not sure that it will explain all cases of MS, but I do believe that exploring the idea of a vascular component to MS has the very real potential to fundamentally change our basic perceptions of the disease.

That said, it's important to keep in mind that the Buffalo study, no matter how positive the results, will only show correlation between vascular abnormalities and Multiple Sclerosis. It will not address the question of whether these vascular abnormalities are the cause or the effect of the MS disease process. While there is evidence to suggest that the blood flow abnormalities seen in CCSVI may in fact be the genesis of the disease, it is also still very possible that the mechanisms that damage nerve and brain tissue in MS also cause the vascular anomalies now being called CCSVI. Only time, and more research, will tell. Of course, many of us (myself included) do not have the luxury of time, and each patient will need to make their own judgments as to how to proceed, armed with whatever new knowledge the study results provide.

These are very exciting times in the world of MS research. It will be extremely interesting to watch the reaction of the US media and mainstream neurology to these findings. If the results are as positive as the above hints suggest, it will be difficult for the US media to continue to entirely ignore the CCSVI issue, and the reaction from the neurologic establishment will likely range from a welcome open-mindedness to cries of absolute "balderdash", depending on the ilk of individual physicians. I predict that we will hear criticism over the fact that many of the Buffalo study principles have in the past had close associations with Dr. Zamboni, a charge that will be rendered impotent as long as the study has been conducted in the proper blinded fashion, which I believe it has.

The excitement in the MS patient population will without question be off the charts, which is testament not only to the promise of CCSVI, but also to the frustrations many MS patients feel with the current state of MS care and treatment.

Buckle up, folks, the ride is about to get very interesting...

Added A Few New Photos to the Gallery

Just thought I'd blow my own horn and call attention to a few new photos that I've added to the photo gallery on the left side of this page.

Now that winter is upon us, getting out and about in the wheelchair to take pictures is a bit of a hassle, what with socks and sweaters and jackets and scarves and gloves and such to be put on using gimpy appendages, and the shortened daylight hours pose a challenge to those of us who prefer our mornings to be early afternoon. As a friend of mine once said, "being awake is overrated", a sentiment I certainly share at times, especially when the temperature dips below 30°F. Sitting in a wheelchair doesn't afford one the opportunity to generate much body heat, and frozen tootsies are especially unpleasant when you can't move them all that much. Icy fingers also make operating my wheelchair mounted camera just that much harder, so suffice it to say that photography isn't quite as pleasurable for me in the winter as it is in the other three seasons. Still, winter does have considerable beauty...

For those of you who have been clamoring for some new Wheelchair Kamikaze videos, I'll tease you with the knowledge that I have the raw footage for two new videos just waiting to be edited into viewable form, but I've been a bit lazy in getting around to actually working on them. I will soon, although I'm still nursing the wounds from not being nominated for this year's Academy Awards. Admittedly, I might be biased, but certainly "Wheelchair Kamikaze: In Search of Audrey Hepburn" should have gotten the nod over "Avatar"...

In any event, here are the new photos, taken over the last three months. The shot of the homeless man was taken on a day when the temperature topped out at 25°F, in a city where three-bedroom apartments sell for $6 million. I'm no marxist, but that just doesn't seem right... (click each to see the full-size version):

I Used To Be Disgusted, Now I Try To Be Amused

Image by Muffet via Flickr

Talk about inflation...

In my last post, I wrote about Ampyra, an oral drug that was recently approved by the FDA to treat MS. This drug does nothing to treat the Multiple Sclerosis disease process itself, but is meant to increase muscle strength and mobility, and provide some symptom relief for MS sufferers. In trials, Ampyra helped 35% of test subjects taking it increase their walking speed by 25% (in timed 25 foot walks).

Ampyra is basically the same exact drug as a much older compound called 4-AP, in a time released form. 4-AP has been available for years from compounding pharmacies, and can be compounded in a time released capsule.

When purchased from a compounding pharmacy, 4-AP costs something around 30 bucks a month, if I remember correctly.

Now that the drug has been renamed, patented, and marketed by the pharmaceutical company Acorda Therapeutics, the wholesale price of Ampyra, which was announced today, will be $1056 for a 30 day supply, or little more than 1000 bucks a month more than good old 4-AP...

When I first read that price, my eyes nearly fell out.

Can I get a "Holy Shit"?...

UPDATE: received this comment from a reader who was in the Ampyra trials. Turns out I may be wrong about the drug being similar in effectiveness to 4-AP:

Fampridine (the name used for the drug while it was undergoing trials) is not the same as 4-AP SR, no matter how similar they sound. I was on the trial, and it works as least twice as well--my improvements in mobility, walking, balance, cognition, muscle strength, everything, were twice as good as the effects of 4-AP SR, which I have also used. Ampyra is worth it for me, no matter what the cost, which of course is huge, but I will try to afford the co-pay no matter what.

I certainly hope this reader is correct. A drug that effectively treats the range of MS symptoms reflected in the above comment will be quite welcome, indeed. As with all of the other MS drugs, I suspect it's effectiveness will vary widely from patient to patient...

Coming Soon: Three New Oral MS Drugs

Image by higlu via Flickr

With all of the ballyhoo going on about CCSVI, I think I've been guilty of ignoring some of the more "mainstream" news regarding MS research and drug development. As enticing as the CCSVI theory is, it's still far from proven, and until CCSVI theory might turn into CCSVI fact, the arsenal in the fight against MS will continue to be made up entirely of drugs designed to either modulate or suppress the immune system.

Two such drugs, Cladribene and Fingolimod, are nearing FDA approval. Both of these compounds are immunosuppressants, but what sets them apart from other current MS therapies is that they are meant to be taken orally, not by injection or infusion as is every other MS therapy currently available.

MS patients currently on the injectable drugs almost universally hate having to give themselves shots on a regular basis. I'm sure there are a few masochistic types out there who relish jabbing themselves with needles, but aside from the demented, the news of oral MS therapies has been met with great enthusiasm.

Cladribene and Fingolimod were both proven in clinical studies to be very effective at cutting down relapse rates and enhancing lesions in RRMS patients taking the drugs. Fingolimod also appears to hold the promise of slowing down disease progression as well, a goal which has long been a holy grail of MS research. The drugs were shown to be comparable in effectiveness to Tysabri, which is currently considered the most effective MS drug on the market. As with most things in life, though, with the good comes the bad. Unfortunately, both drugs carry with them the possibility of some very perilous side effects, most notably the increased risk of dangerous infections, and in the case of Fingolimod, an increase in the incidence of skin cancer.

Both of these drugs significantly suppress the human immune system, thereby inhibiting MS patients' immune systems from attacking their own cells and destroying nerve insulating myelin, thus causing the nervous system damage seen in MS. While drugs of this type have been shown to have proven benefit to MS patients, the long-term implications of suppressing the finely balanced and hugely complicated human immune system remain to be seen.

I don't mean to scare people off of using drugs that have demonstrable benefits, but I really wish that MS researchers would start concentrating their efforts on finding the root cause of MS, rather than figuring out new and nifty ways of suppressing an immune system gone awry, which is actually a symptom of MS, not the genesis of the disease. I've said it before and I'll say it again: treating MS by suppressing the immune system can be crudely compared to treating a broken leg with painkillers. Symptom relief is definite and measurable, but the underlying cause of those symptoms is left entirely unaddressed.

A third MS drug also on its way to a pharmacy near you is called Ampyra, which sounds to me more like a drug that should be used to treat the undead than MS patients. Who names these drugs, anyway? Ampyra is the first drug on the market designed to increase the mobility of MS patients, which I think we all can agree is a very good thing to do. Ampyra works by increasing the conductivity of damaged nerves, and was shown in trials to help 35% of those taking it increase by 25% the time it took them to walk 25 feet. Not exactly scintillating numbers, but as the saying goes, any port in a storm.

Ampyra is a slightly modified time released version of an older drug known as 4-AP, which has been available from compounding pharmacies for many years. I tried 4-AP a few years ago, and found its effects to be subtle but noticeable. As my disability increased, I found it to be less effective, so I stopped taking it. When Ampyra hits the market, maybe I'll give it another try.

An interesting fact about 4-AP (and thus Ampyra) is that the compound is used as an industrial bird poison, and is very effective at killing off large numbers of our feathered friends when they become pests. It does this by frying their little feathered nervous systems. When used in small doses in nerve damaged humans, though, those same nerve exciting properties help damaged nerves to work better. Just to be on the safe side, though, when I was on 4-AP, I made it a point to stop trying to fly. It's very important to strictly follow dosing instructions with this drug, as higher doses can lead to seizures.

Back when I was getting 4-AP from a compounding pharmacy, a month’s supply cost something around 30 bucks. The compound wasn't patented, so it was relatively cheap. Who wants to bet me that Ampyra, which is almost identical to 4-AP but has been patented and marketed by the drug company Acorda, will cost a teeny-weeny bit more than 30 bucks a month?

Attended a Benefit for the University of Buffalo CCSVI Imaging Study

Image via Wikipedia

Last Friday night, January 29, my wife and I attended a small fundraising party for the University at Buffalo's ongoing CCSVI imaging study, which is attempting to determine if there is a clear correlation between the vascular abnormalities now known as CCSVI and Multiple Sclerosis.

The party was the first of what is hoped to be many such events held around the country, raising funds to expand the study from the 500 subjects that have already been imaged to the desired total of 1700 subjects. The study is single blinded, meaning that the researchers reading the MRV and Doppler imaging results don't know if the person imaged had MS or was a healthy test subject. This blinding ensures that no unintended bias on the part of the researchers can skew the results of the study.

The fundraiser, which was held in the Manhattan restaurant O'Neal's, was a great chance to meet and greet like-minded individuals who are hopeful that CCSVI will prove to be an important discovery in the quest to unravel the mystery that is MS. Hosted by Eric C. Alcott (Development Officer, UB School of Medicine and Biomedical Sciences) and his lovely wife Deborah, over a dozen supporters attended the event, and much interesting information and lively banter was exchanged. Hell, I'll go so far as to say the thing was actually fun, and I didn't even have to make good on my threat to run over the feet of anybody who went light on their donations. Guess I'll have to vent my kamikaze urges on some unsuspecting pedestrian on the street later this week.

The initial results from the first 500 patients studied are due to be released sometime within the next two weeks, and although nothing specific was divulged, it was hinted that we would very likely be encouraged by the results that will soon be disclosed.

If you'd like to help the continuation of the study with a donation, be on the lookout for fundraising parties near you, or, better yet, donate the whizbang 21st century way, directly from BNAC website.

Why the US News Media Silence on CCSVI?

Image by thorinside via Flickr

The topic of CCSVI, the radical new theory that MS may in fact be a vascular disease, has been raging on the Internet for several months now. On some prominent MS forums, the topic has bred near hysteria among contributors, and the websites of most of the major MS advocacy groups (the NMSS, the MSAA, etc.) have featured CCSVI information, with varying degrees of enthusiasm.

Outside of the US, CCSVI has been featured prominently in mainstream television and print news media outlets. In Canada, one of the major television networks aired a 20 minute long newsmagazine feature on CCSVI, and the pros and cons of the theory have been written about in many of the country's newspapers. The European news media have also devoted time to the theory, which got its start when the wife of an Italian vascular surgeon developed multiple sclerosis, and he investigated the blood vessels associated with her central nervous system, finding odd vascular abnormalities.

In the United States, though, the media have responded to this potentially groundbreaking theory with resounding silence. There have been no print articles about CCSVI in any major American newspaper, nor have any of the US television network news organizations paid it any notice. Very strange, given the breathless coverage many medical discoveries of lesser potential are given in the modern, voracious 24-hour news environment that demands a constant stream of newsworthy items and events. The "balloon boy" hoax was given countless hours of coverage; yet a story about a possible breakthrough in the fight against Multiple Sclerosis, a disease that affects hundreds of thousands of Americans, has warranted not even a whisper.

I've heard from very reliable sources that both CBS and ABC have had TV news stories in the can and ready to go for weeks now, but for some strange reason have not deemed them airworthy. Doctors and patients have been interviewed, and video pieces have been cut, only to be put on a shelf.

If I were a cynical man, I might wonder if sponsorship pressures could possibly be behind the silence of US news outlets. After all, if CCSVI were to prove correct, pharmaceutical companies would stand to lose billions of dollars in the yearly sales of the immunosuppressant MS drugs that have become a major cash cow for them. If I were a cynical man, I might watch all of the slick prescription drug commercials that now flood our airwaves, and contemplate the huge influence that the companies that pay to air them could exert on network and cable TV organizations with the mere threat of withholding some of their advertising dollars. If I were a cynical man, I might think about the fact that the United States no longer has any independent news gathering operations, the likes of which have all been swallowed up by huge corporate conglomerates whose focus is on the bottom line, not the dissemination of unbiased journalism.

I'm still not 100% convinced that CCSVI will prove to be THE answer for every patient struggling with multiple sclerosis. It very well might be, but there is still much to be discovered, and proper news coverage could spur into action research organizations, and the foundations that fund them, and thereby quicken the pace of discovery. If I were a cynical man, I'd contemplate these things while quietly humming the Viagra song...

Pants on the Ground, Wheelchair Style

I can't say I'm a fan of American Idol, as honestly, I've maybe watched 45 seconds of it through the years. I must admit, I'm not terribly fond of modern pop culture, and immensely prefer Lady Day to Lady Ga Ga. But even I have not been able to escape the charms of "Pants on the Ground" a little a cappella rap ditty that was performed by a 62-year-old gentleman during one of this year's American Idol auditions. Since it first aired a few weeks ago, the video clip of "Pants on the Ground" has gone viral, and I suspect that deep in the Amazonian forest, where pants haven't even been invented, there are tribal warriors chanting "Pants on the Ground" as they prepare for ritual battle. I've gotta admit, the little tune is kind of catchy...

Now, the irrepressible Mark E. Smith (the Mobility Superstar) and the folks from Pride Mobility have put together their own stellar video version of "Pants on the Ground". Pride Mobility, the manufacturer of fine mobility products, is the maker of the Wheelchair Kamikaze's own Quantum Rehab Q6000Z, the wheelchair part of Wheelchair Kamikaze. Mark E. Smith, when he's not busy being a junkyard dog gangsta rapper, serves as Pride Mobility's Consumer Research Manager, and runs the invaluable website Wheelchair Junkie , which in my humble opinion is the Web's best resource for information on all things wheelchair.

So now, strap yourselves in, pull your pants low, and get ready to groove to the Wheelchair Junkie's version of "Pants on the Ground"...

Every Exit An Entrance: Three Years on Disability

Image by Dan4th via Flickr

Today is the third anniversary of my leaving work and going on long-term disability. The universe being the lattice of coincidence that it is, today is also the 20st anniversary of the day I started the first job of what would be my career, TV/video/film production. Kinda weird symmetry, but so it goes...

Naturally, the day brings mixed feelings. I think back to January 18^th, 1990 with a fond sense of nostalgia. I was 26 years old, probably a bit late to be starting my first "real" job, but I spent about five years nurturing the delusion that I was going to be either the next Johnny Rotten or Jack Kerouac. I'd loudly and obnoxiously sworn off ever working a real job, but the combination of cruel fate and the hard realities of such little matters as shelter and eating forced my hand. A bizarre set of circumstances (including a missed train and a punch in the eye) landed me in Fort Lauderdale, Florida, pretty much flat busted and sleeping on my mother's couch.

With a degree in film from Boston University in hand, I managed to land a job as Associate Producer of Local Programming at Continental Cablevision of Broward County, the local cable TV outlet, for a salary barely above minimum wage. Even at that paltry sum, I was grossly overpaid, because I didn't know my ass from my elbow about much of anything, much less producing video programming. It was strictly the cachet that a degree from Boston had in South Florida in those days that got me the position.

My first assignment was to cover "Horatio Alger Day" at a local high school that was largely populated by impoverished kids from the wrong side of the tracks, who could do with a bit of inspirational hokum. I was sent out with a camera and an intern who knew even less than I did about the nuts and bolts of video production. I did my best at videotaping the event, and even did an interview with the keynote speaker, the founder of the Wendy's hamburger chain, Dave Thomas. When I got back to the studio and reviewed the footage, it quickly became embarrassingly apparent that I had forgotten to white balance the camera, and all of the images I recorded were tinted bizarrely orange, looking a lot more like they were shot on Mars than in Pompano Beach. And thus began my brilliant career.

Fast forward 17 years, to my last day of working at one of New York City's premier video and audio production facilities, as the Director of DVD Production, where I'd played a large part in putting out some of the best-selling music related DVDs in the history of the format. I'd been diagnosed with Primary Progressive MS nearly 4 years earlier, and the fracking disease had whacked away enough of me to make the decision to go on disability not much of a decision at all. Preferring to not engender either sympathy or pity, I composed a parting note to my coworkers that I intended to send out at the very end of the day, and requested that my higher-ups not do anything special to mark my departure.

Much to my chagrin, they ignored my request, and put together a little farewell party for me, complete with cake and champagne. Although I thought I would be mortified at such an event, it turned out to be a nice way to put some psychological punctuation on that chapter of my life. I'll always treasure the experience of having two of my most junior people, part-timers both younger than I was when I first started out, tell me that they didn't think they'd ever have a better boss, because they felt like I truly cared about them. Knowing a little something about my back story, the two gave me a book of photos of New York's punk rock scene in the 1970s. I think there's still a mark on the inside of my lip from where I had to bite it to keep from blubbering.

Well, it's been three years since that day, and I've gone from Director of DVD Production to Wheelchair Kamikaze. On my last day of work, I struggled out of the facility wearing an ankle brace, not even needing a cane. These days I spend much of my time with my ass firmly planted in a wheelchair. Thankfully, it's one that goes fast. I've grown fond of saying, "Go fast, even if your fast is slow".

Though some find the transition from working to disability jarring and traumatic, my experience was anything but. After an initial couple of weeks during which I felt compelled to call the office every day, I quickly adjusted to a life that was increasingly limited physically but was also suddenly filled with the freedom to do what I wanted to do when I wanted to do it.

It seems almost forbidden to admit this, especially since I achieved a fair measure of success in a very competitive, high profile industry, but the truth is that I never really liked working. To be completely honest, in many respects I hated it. The only job I truly enjoyed was that very first one, way back in Florida, when I made no money but spent my days shooting and editing video, writing scripts, wiring up video setups, and getting my hands dirty. As my career progressed, and I experienced "success", I became more of an administrator, and at times I felt like a prisoner, a captive to my own achievements. In the middle of my career, I had a couple of jobs which required me to put on a tie every day, and every morning I silently cursed as I slipped that silk noose around my neck.

My last job, the DVD gig, was much more gratifying, but I think that feeling had its roots more in knowing that I had made it to the major leagues than in the actual day to day work I was doing. It felt a lot better saying I was the "Director of DVD Production" for a music industry giant than it felt actually being it. In 18 years, I'd gone from screwing up "Horatio Alger Day" to directing a department that put out mass-market product that sold hundreds of thousands of copies, but I felt that I had somehow strayed far off my path, and I yearned for the freedom of my younger days, when chasing dreams trumped chasing dollars.

How odd, then, that this insidious, hateful disease has provided me the out I coveted. I've learned a lot about myself these last three years, and some things about others as well. I've gained some insight, and maybe even some wisdom, which I've tried to share, with varying degrees of success. Attempting to save my own ass, I've learned more about MS than about any other subject I've ever studied, and I've tried to communicate that knowledge too, so that other backsides might also be saved.

It's quite possible that all of this insight, knowledge, and learning may very well prove powerless in the face of the creeping paralysis that continues to afflict me, and certainly there must be much more benign ways to achieve self-awareness. But, like it or not, this is my lot, and I owe it to myself to make the most of it, and in some way try to imbue the experience with some measure of meaning. Faced with a constant reminder of the preciousness and frailty of existence, it becomes apparent that time should not be wasted.

Remembering Stella

My best buddy Stella passed away just a little over three years ago. She was a faithful friend with a huge heart, who never failed to know just how to make me smile, and often had me laughing riotously out loud. Stella was compassionate and sweet, and knew exactly how to live in the moment and seize the day. She was faithful, devoted, and I knew that I could trust her entirely with my deepest darkest secrets. About the worst thing I can say about her is that she had the unshakable habit of loudly and vigorously chewing her paws in the middle of the night, while emitting strange noises that were impossible to sleep through.

Stella was, of course, my furry best friend, a yellow Labrador Retriever who came into my life in 1998, while I was still living in Fort Lauderdale. A coworker had just given birth to a baby girl, and no longer had the time to care for Stella. I'd recently moved into a charming little 1940s Florida cottage with my then girlfriend, and was jonesing for a dog. So, the timing was perfect, and after two "meet and greets", during which Stella gave me the thumbs up, I was a happy new doggy daddy. Stella had just turned three years old when she came to me, and I was five years away from developing MS.

I hadn't had my own dog since I was a kid, but I had bonded with the canine companions of several friends and lovers that I'd met along the journey of my adult life. I was particularly close with a Dalmatian named Briar, whose owner unfortunately turned out to be a pathologically lying serial cheater who delighted in using my heart like a roll of Charmin. Quick life lesson: if you find out that your lover has cheated on every person they've ever been with, don't fool yourself into thinking you can somehow change them. Simply familiarize yourself with the term "cuckold", and assume the position. Better yet, get as far away as possible, even if they have an adorable spotted four-legged creature with the most haunting eyes you've ever seen...

But, I digress. Stella and I quickly bonded, even as my girlfriend and I quickly unbonded. Turned out my Labrador friend enjoyed spending Sundays sprawled on the couch watching NFL games as much as I did, as long she could watch them while laying between my legs with her head nestled on my belly. We took long walks around the neighborhood together, although she wasn't much for jogging. The one time I took her out for a run, she made it about a block before squatting in the middle of the road and doing what dogs generally do when they squat. After completing that most natural of acts, Stella let me know that jogging just wasn't her thing. No harm, really, because jogging wasn't really my thing, either.

About six months after Stella joined me, the girlfriend and I decided to call it quits, and I decided to get the hell out of Florida, a place I never much cared for, even though I spent 10 years there. I think the tropical sun beating on your noggin causes some kind of dementia, because even though I felt like a stranger in a strange land the entire time I lived down there, for some reason I could never formulate actionable plans to leave. It was like, "gee, this place royally sucks, ooh, I think I'll go for a swim..."

Anyway, Stella and I were soon back in my hometown of New York City, living in a section of the city known affectionately as "Hells Kitchen". For a dog that was born and raised in Florida, Stella took to city life like a socialite. For some reason, she naturally curbed herself (if only the same could be said for socialites), and she loved the wonderful sniffing opportunities that the city streets offered up in droves. She also loved the take-out Chinese joint around the corner from our apartment, which always had partially eaten chicken wings discarded on the sidewalk in front of it. One of the few arguments Stella and I ever had were over her insistence on insanely gobbling down as many of those gnawed on chicken bones as quickly as she possibly could, but a few rounds of very stern "bad girls" helped her kick the habit. You see, she really was a "good girl", and my disapproval trumped the irresistible gristly remains of chicken wings, true testament of her feelings for me.

For about a year, Stella and I were strictly a duo, spending lots of time at neighborhood dog runs and in Central Park, where she'd take the occasional, ecstatic, jump in the lake. She absolutely lost her mind during that winter's first snowfall, which was the first snow the native Floridian had ever seen. If pure joy could be embodied in flesh and blood, it would be Stella burying herself into mounds of freshly fallen snow. Her glee was infectious, and soon I too was a snow-covered whirling dervish, joining Stella in her carefree frolicking, covered head to toe in the powdery white stuff covering the fields of Central Park.

After about a year back in the city, late one night in a neighborhood bar I met a girl named Karen, who, despite my best efforts, didn't seem very interested until I mentioned the fact that I had to get home to walk my Labrador Retriever. Turned out that Karen had grown up with Labradors, and, figuring that a single guy with a Labrador couldn't be all that bad, she gave me her number. Just about two years later, we were married. At first, Stella didn't exactly welcome Karen with open paws; after all, Karen had supplanted her place on the couch. But the two soon became buddies, and Karen even succeeded in getting Stella to lose a little weight (for a while, we referred to her as "Jabba the Pup"), much to the veterinarians delight.

For a year, everything was hunky dory, until one very cold day in March 2003, when I took Stella for a very long walk along the Hudson River. About 2 miles into our trek, I noticed that I'd started limping. I didn't think much of it, but in the following weeks, the limp in my right leg grew worse, and I felt my right arm starting to weaken. Several doctors visits and an MRI later, and I found myself sitting in a doctor's office listening to words like "multiple sclerosis" and "progression" and "spinal tap" somehow become associated with the words "me" and "holy shit".

Strangely enough, just about the same time, Stella also started having all kinds of health problems. I honestly believe that she was so empathic that she somehow shared my distress and manifested physical illnesses of her own. Between 2003 and 2006, Stella developed mast cell cancer and autoimmune hepatitis. She had multiple surgeries to get rid of the cancer, and was put on a variety of medications and a special diet to address the hepatitis. For a while, we were actually both on the same immunosuppressants, bought from the same pharmacist. On several occasions, it appeared that Stella was on death's door, but she always managed to somehow pull through, often to the veterinarian's surprise. He'd smile, shrug his shoulders, and offer the only explanation he could, "She's Stella..."

Through it all, Stella stayed Stella. Though she would suffer a while from her painful surgeries, and the hepatitis would sometimes rob her of strength and appetite, as soon as she felt a little bit better, her tail was wagging, her eyes were bright, and she was ready to embrace whatever joy that the day had to offer. In so many ways, she taught me how to deal with my own illness, which progressed continuously through the ensuing years.

Stella didn't waste any time bemoaning her fate, or thinking about what might have been, because she was blessed to simply not have the capacity to do so. As my condition has continued to worsen, I've often thought of Stella, and have realized just how right she had it. Feeling sorry for yourself or worrying about future calamity only serve to poison the present, and the present, the now, and our place in it, is the only thing in the entire universe that we have any real control over. Endeavor to live your life like a Labrador, attack each day like it's a great big Rawhide bone sent from heaven.

Eventually, Stella's illnesses and advancing years got the upper hand; the cancer returned, and my sweet little girl started slipping away. Over the Thanksgiving weekend of 2006 we boarded her at the veterinarians while we visited my mom in Florida, and when we returned the vet told us that Stella's condition had worsened, and he recommended we put her down. He brought her out to us with an IV already inserted into her leg, but upon seeing us I could see that familiar spark in her eye, and she started eating the treats I tried to hand feed her. We decided to bring Stella home, to give her the chance to make one more rally.

By this time I was no longer able to walk Stella, and most of her caregiving fell to Karen. Stella actually did rebound a bit for the first few weeks, but I guess the power of love can only go so far. A few days after Christmas, we brought Stella back to the vet one last time, held her, and said goodbye. Those weeks between Thanksgiving and Christmas were like one extra month of bonus life for her, during which Karen took Stella to Central Park almost every day, and Stella ate all of the chicken and turkey she wanted.

Stella saw me through many transitions; from Fort Lauderdale to New York, from single to married, from well to Multiple Sclerosis. Aside from my wife, there is no being I have ever felt closer to, or more intimate with. I miss her still, and will for the rest of my days. Karen and I now live in a building that is wheelchair friendly, but doesn't allow dogs. If I somehow beat this thing, first thing we're doing is moving out of this place and getting ourselves a great big pooch, who will take Stella’s space, but surely not her place.

Here's my favorite photo of my pal Stella...