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 that work 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?