Man Plans...

Image by Ivan Walsh via Flickr

My last post characterized MS as an incorrigible thief, gradually stealing all that is near and dear to the patients it torments and those who love them. Combined with a video produced by the NMSS's Beth Clark that heart wrenchingly recounted her family's struggles with her mom's very aggressive MS, the post took a hard look at some of the ugly realities about Multiple Sclerosis, and, judging by the many online comments and private e-mails the post elicited, it hit readers hard, and was quite upsetting to many.

It's never my intent to upset or depress the readers of this space, and I try to infuse my writings with reasons for hope, and with strategies for fighting back against our common foe, if not in body than in spirit. When viewing Beth's video, it's important to keep in mind that her mom was hit with an especially destructive and debilitating form of MS, and was stricken at a time when there were no medical treatments for the disease.

Still, MS is at best a daunting adversary. For those of us with the progressive forms of the disease, there are no proven pharmaceutical interventions. There are medicines to help us manage some of our symptoms, but we are largely left to watch helplessly as the disease takes its physical toll, which proceeds at different rates and in different forms for each of us, but marches ever onward for us all. How then, to separate the physical from the psychological, and not allow MS to break our spirit even as it spins its contemptible web of disability?

Although it's been said so often so that the sentiment might feel dangerously trite, it is imperative to do your best to live in the now. Even with a present filled with uncomfortable and regrettable realities, the only way to find contentment in any form is to stay rooted in the moment. It can be enormously enticing to dwell in the past, which from the vantage point of a compromised present can seem like a dreamlike fantasy land. Even hard times from years long gone can suddenly be yearned for when remembered from the seat of the wheelchair. Oh, to suffer some heartbreak but still be able to walk, to live through one of life's bitter disappointments but still be able to get up the next day with the chance to make right the wrongs.

Make no mistake, it can be of significant joy and comfort to remember the glory days, and connecting with friends and family who shared those times is an important way of confirming that, yes, all of that crazy stuff really did happen, but the past is best used to inform the present, to learn from it the lessons that allow us to make the most of our most precious possession, today. We only get one shot at today, and those of us who deal with the reality of chronic illness know all too well that wasted time can never be recovered, that when today converts to yesterday it is no longer a living thing, but becomes just a lifeless snapshot for the scrapbook in your mind. Better make this day a good one, despite whatever hardships must be overcome, because there is no greater tragedy than looking back and realizing that you've let yet more of that most precious and ever dwindling commodity, time, slip away.

The fact that MS is a progressive disease can make the future appear to be quite an ugly proposition. No matter what stage of the disease you're in, the knowledge that this day could very well find you in better shape than tomorrow can turn all tomorrows into fearsome things. But the incontrovertible truth is that no man knows what tomorrow will bring.

There is an ancient Yiddish proverb that says, "Man Plans, God Laughs". Regardless of your religious inclinations, the truth contained in those words is undeniable. If "God" doesn't work for you, then substitute "The Universe" or "The Fates". It is the rare person who can think back 10 years and honestly say that their lives have unfolded just as they would have predicted. For most of us, healthy or sick, the jigs and jags of life bring breathtaking surprises, good, bad, and everything in between. Remember, too, that good and bad are simply labels that we choose to apply to the circumstances in our lives. Nothing that happens to us is inherently good or bad, they only become so when we choose to tag them as such.

We all have little preview clips of what we expect the future to hold running persistently in our minds. Like the previews we see in movie theaters, though, these clips rarely bear much in common with the realities of the full-blown production. For a person with MS, the preview running in our heads can easily be that of a horror flick, but like most fright films, the anticipation is often much more terrifying than the reality turns out to be.

When first given my diagnosis, my inner projectionist spooled up reels of worst-case scenarios, some of which actually did resemble the condition in which I now find myself. The image of me in a wheelchair was sickening, and along with that image I conjured up all sorts of torment and agony. The reality of me in a wheelchair, though, while nothing I would have chosen, is a far cry from the misery I then imagined.

Much to my surprise, I'm still me. I can still laugh, and love, and worry, and despise, just like the old me. And without the wheelchair, there would be no Wheelchair Kamikaze, which has turned out to be one of the most humbling and gratifying roles I've ever been privileged to play. The give-and-take I've had with the readers of this blog have been incredibly enriching, and I'm grateful to everyone who reads these words.

Would I chuck it all for the chance to take a graceful and painless stroll around the block? Hell yes, but I refuse to let the lack of that option plunge me into the depths of despair. I choose to experience this moment in its fullness, informed by the lessons of the past and undaunted by fears of the future. It's not always easy, this living moment to moment, and I screw up more than I care to admit, but with practice and diligence it can be done more often than not.

As a community, people with MS have more reason for hope now than ever before. CCSVI holds the tremendous and very real promise of fundamentally changing the way Multiple Sclerosis is thought of and treated. Even if CCSVI turns out to be a false lead (which I don't think it will be), the forces that the CCSVI movement have unleashed will never again be put back in their bottle. Patients have learned to advocate for themselves, and researchers are being pried away from their beloved "autoimmune" model and forced to question all their previous assumptions. Additionally, stem cell research moves steadily forward, shining rays of hope on those whose nervous systems are in desperate need of repair.

We could very well be standing (or sitting, whatever the case may be) at the cusp of a radical new era in the care and treatment of those afflicted with Multiple Sclerosis. All the more reason to not flee into your own past, or crumble at thoughts of your possible future, but to live each day as if it's the last today you'll ever have. Because it is; for both sick and healthy alike, once gone, today is never coming back.

Grand Larceny

MS is many things. It's a disease, a puzzle, an enemy, an industry. But for those of us who suffer from it, and for those who love and care about us, I think that most of all, MS is a thief. It's a cold hearted son of a bitch, insatiable in its appetite for banditry, unquenchable in its thirst to pilfer. It is indiscriminate in its pickings, taking the physical as well as the emotional, amassing a hoard of plunder from the illusion that its victims once called everyday life.

Some of what is stolen is easy to spot, especially in those afflicted with more progressed disease. Many physical deficits are glaringly apparent; a wheelchair substituting for swindled legs, a stiff and atrophied arm the sad stand-in for the lost ability to write, or shake hands, or tie a shoe lace. Cognitive losses might be harder to spot, but their impact can be just as grievous as physical disability. MS gluttonously grabs vocabulary and memory, the ability to string together thoughts and to properly express them. The crushing fatigue almost universally experienced by MS patients can cripple the will to fight back. Waking up more tired than when you went to bed is no way to ready for the daily battle.

MS steals pleasures, both simple and complex. One of the things I miss most is driving, not for the utility and independence that driving an automobile brings, but for the sheer pleasure of it. Until I was in my 40s, I never owned a car with a backseat. Two-seat roadsters were a passion, and I still crave cruising down the open road, feeling the wind twisting through my hair, the sun warm on my face, the texture of the road through the steering wheel, and the power of the engine through the trembling stick shift. I long for the subtle satisfaction of downshifting into a turn, the mechanical harmony of the sudden jump in RPMs coinciding with the well-timed loss of MPH. Now, the stick shift has been replaced by the joystick of my wheelchair, courtesy of my felonious disease. Multiple Sclerosis commits the crime, but I must do the time.

MS is not satisfied to simply target the unlucky souls who suffer from it. Those around them are caught in the disease's wicked gravity, easy prey for the master thief. Sons and daughters lose fathers and mothers, or at least the fathers and mothers that they once knew and depended on. Husbands and wives find the foundations of their relationships twisted and bent, the title "caregiver" suddenly thrust into the intricate emotional balance required of any successful romantic relationship. Some unions survive the trauma; sadly, many do not.

Friendships, too, are tested. As the patient learns to deal with a new reality and a revised set of priorities, some friendships simply wither on the vine, while others can become more intimate. I've learned how invaluable old friends truly are, who can see past the larceny of the disease to the human being that still lies within, who now needs them more than ever to reaffirm the life that once was, to confirm the memories that can sometimes seem like fairy tales.

The one thing that Multiple Sclerosis can never steal is the essence of a person, their humanity and individual dignity. The crisis of disease can be the forge upon which courage and heart can be hammered into a sharp edged sword or gleaming shield. I've seen the crucible of chronic illness reveal qualities within patients that they never knew they possessed, bravery and perseverance and steadfastness, adaptability and inventiveness and dauntless spirit, qualities unveiled all the more with each blow the disease delivers. It's not the ability to strut, or dance, or drive fast cars that defines a person; rather, the trappings of a healthy life can camouflage a person's true character, even to themselves. Stripped of life's adornments, we are forced to look within, and see perhaps for the first time who we are and who we want to be. Multiple Sclerosis can plunder much that is held dear, but the heart and soul of a person it can never touch.

Last week I had the terrific opportunity to have lunch with an impressive and empathetic woman named Beth Clark, who works for The National Multiple Sclerosis Society at their national headquarters in Denver, Colorado. The NMSS can often seem to be a faceless monolith, and is an easy target at which to vent frustrations for the many patients thoroughly fed up with the MS status quo. The Society's slow response to CCSVI fanned the flames of patient ire, but, responding to patient activism, the NMSS has recently thrown their considerable weight behind the efforts to get CCSVI properly investigated, sponsoring a live webcast featuring many important CCSVI players (click here for forum replay and transcript), actively soliciting grant proposals for CCSVI related research, and prominently featuring CCSVI in the latest issue of their quarterly magazine, Momentum.

Beth Clark is the antithesis of the faceless bureaucrat, and was instrumental in putting together the recent CCSVI webcast. She is herself the daughter of an MS patient who suffers from a very aggressive form of the disease, and whose experience with the disease defines every MS patient’s worst fears. Beth has, time and again, witnessed and been victimized by the heartless thievery of Multiple Sclerosis.

The disease upended Beth's life in childhood, her mother stricken with it when Beth was only 10. By the time Beth was 17, MS had forced her mom into a nursing home. Beth has devoted her life to helping find a cure for MS, and produced the following video about her mom and her family's struggle with MS. It speaks eloquently and with touching directness of the ravages that Multiple Sclerosis brings to not only the patient stricken with it, but all of those around them. Please watch.

The Use of Stem Cells in the Treatment of Multiple Sclerosis

Image via Wikipedia

In my visits to the many MS Internet forums, the topic of stem cells, and their potential use to help MS patients, seems to create more confusion than almost any other. CCSVI (click here for info) is the hot topic of the day, and there are indeed many misconceptions flying around about CCSVI as well. But CCSVI has generated so much discussion that many patients are reasonably well-versed on the basics of the idea. When it comes to stem cells, though, there seems to be an air of mystery and controversy about them that continues to obscure the issue.

I'm not going to discuss embryonic stem cell research here, simply because the use of such cells in any therapeutic manner is still many years off. Surely, the debate over embryonic stem cells stirs passions on both sides, but I'd like to focus here on stem cell therapies that are currently, or will soon be, available to MS patients, all of which entail the use of adult or umbilical cord stem cells, the application of which circumvents any arguments over the meaning of "life".

There are currently two very different approaches to using stem cells to treat MS. One approach uses stem cells to reboot a patient's immune system, and the other uses the cells in an attempt to directly repair the damage done the central nervous system by the MS disease process. These two approaches are vastly different, and it's extremely important for patients to make the distinction between the two.

The approach that tries to reboot the immune system (often called autologous hematopoietic stem cell therapy, or HSCT) uses very powerful chemotherapy drugs to completely destroy the patient's immune system. Once the immune system is entirely ablated, mesenchymal stem cells, derived from the patient's bone marrow (which had been harvested previous to wiping out the immune system), are intravenously infused back into the patient, in the expectation that they will rebuild a new immune system that is free of the "defects" that previously lead it to attack the patient's CNS. This approach largely assumes that MS is primarily an autoimmune disease, and that by giving the patient a new immune system, their MS will be eradicated.

This therapy has been tested for over a decade, and has proven to be most effective in patients with aggressive early-stage disease. When HSCT was first attempted, there was a high rate of patient mortality (about 10%) due to the toxic combination of chemotherapy drugs being used. Since then, the process has been refined, and patient mortality, while still a concern, is not as big an issue. Periodically, news stories circulate about patients whose conditions have apparently been greatly improved by this process (click here for article).

There is also a process known as HyCy (also known as Revimmune) that is similar in approach but does not require the transplantation of stem cells. Instead, the patient's resident stem cells are protected during the immune ablation process, and then stimulated through the use of drugs to reconstitute the patient's immune system. Again, this approach has been shown to be effective in RRMS patients, but less so in patients suffering from the progressive forms of the disease (click here for article).

There has been an increasing body of research (most of which has involved the postmortem examination of the CNS lesions of deceased MS patients, the "freshest" of these lesions showing no signs of immune cell involvement) that appears to demonstrate that the immune response seen in MS is secondary to some other process (Infectious?, Genetic?, Vascular?, Toxic?) that attacks the CNS, to which the immune system then responds (click here for article). In other words, "autoimmunity" is looking more and more to be a symptom than a cause of MS, and this calls into question the long-term efficacy of approaches that "reboot" a patient's immune system, since the underlying cause of the disease remains unaddressed. Still, as stated above, this approach has seen its share of success.

Another, entirely different approach is to use stem cells to directly try to repair the damage that has been done to the CNS by whatever MS disease process is attacking it. In this approach, mesenchymal stem cells, which can be harvested from a patient's bone marrow or fat cells, are injected directly into the patient's spine (intrathecal injection) in the expectation that the cells will migrate to damaged areas of the CNS and effect repairs. There are also some clinics that use umbilical cord cells, often in combination with mesenchymal cells, in this same approach.

Mesenchymal cells are also sometimes given intravenously in an attempt to modulate the immune system of the patient undergoing therapy. These cells have been shown to have extreme anti-inflammatory properties, which can also be of benefit to MS patients.

There are several locations internationally that are attempting to use stem cells to repair the damaged central nervous systems of MS patients. I've been in contact with several patients who have traveled to Israel for this type of therapy, where the protocol involves extracting stem cells from the patient's bone marrow, multiplying the cells over the course of several months, and then injecting the cells back into the patients, primarily intrathecally, but also sometimes intravenously. The actual transplant of the cells is usually done in Greece, since the procedure is not yet approved in Israel. The patients I've corresponded with have generally told me that the results of this therapy can range from extremely subtle to fairly dramatic, but that the benefits seem to level off and often recede after six or eight months.

This regression make sense, given the fact that the MS disease process is left unaddressed, leaving the repaired tissues open to renewed attack by whatever it is that drives Multiple Sclerosis. As long as they MS disease process remains a puzzle, this approach would require multiple applications over the course of months and years to keep a patient stable.

The Cleveland Clinic is preparing to start a small, 24 person human trial using mesenchymal cells to repair damaged nerve tissue. The trial is supposed to start sometime later this year (click here for info).

In England, a physician named Dr. Neil Scolding has been conducting a 20 person trial, the results of which are encouraging, but not miraculous (click here for info). Prof. Scolding reports that his patients, who received intravenous infusions of their own mesenchymal stem cells, experienced an approximate 20% increase in nerve function. Although 20% might not seem like much, restoring nerve function to damaged cells in the CNS has long been a holy grail of medical research, so these results are tremendously significant.

Currently, clinics in Costa Rica, Panama, Mexico, China, and Germany also make variations of this procedure available to patients, at a price. Some of these operations are outright shams, while others seem to be serious endeavors, and some patients who have visited these clinics do report significant improvement in their condition. Unfortunately, all such accounts are strictly anecdotal, as none of these clinics has ever published their results in any scientifically valid manner.

There are also some clinics, based primarily in China or Russia, that claim to use embryonic stem cells as a treatment for MS. I would strongly urge all readers to not even remotely consider undergoing such treatment at this time. The use of embryonic cells can and has led to recipients developing fatal cancers, as the technology to control the action of embryonic cells has not yet been perfected.

A few months ago, I had a discussion with one of the higher-ups at the Myelin Repair Foundation (one of my favorite MS nonprofits-click here for website), who told me that some of the research his organization is funding has shown that after migrating to areas of nervous system damage, stem cells apparently secrete a variety of chemicals that trigger cell repair. In theory, this could lead to the isolation of these chemicals, which could then be synthesized and used to create compounds that would stimulate nervous system repair without the use of stem cells. Of course, the use of such breakthrough technology is still many years away.

My own feelings are that stem cells hold enormous promise in repairing damaged nervous system tissue (including myelin), but that researchers still have much to learn. In addition to experimental neuroregenerative drugs (click here for info), stem cells likely offer the greatest hope for patients seeking to regain function lost to Multiple Sclerosis.

Still, the most vital piece of the MS puzzle is to figure out just what it is that triggers nerve cell damage in the first place. This is one of the reasons why research into CCSVI is so important, because if vascular abnormalities significantly impeding the flow of blood through the CNS do indeed prove to be an underlying cause to the MS disease process, we might for the first time be able to stop that process, which would then allow stem cell repairs to be that much more effective. The dream of MS researchers is a one-two punch that would permanently stop the disease process in its tracks, and then repair the damage that the process has already done. Advancement towards these goals has thus far been slow, but research is gaining momentum, and some startling revelations could very well be coming within the next few years.

Bottom line, there is real reason for hope.

Amazing Pre and Post CCSVI Liberation Procedure Videos (Updated)

The following videos were posted to YouTube by MS patient named Denise. I don't have much information about her, and I don't know where her procedure was done, or if balloon angioplasty or stents were used. Upon watching these videos, though, the results speak for themselves. If you are unfamiliar with CCSVI or the Liberation Procedure, please click here.

Here's the video taken a few days before the patient underwent the Liberation Procedure:

And here's the video taken less than 24 hours after her procedure:

Obviously, the improvements depicted are startling. I've been in touch with many patients who have undergone the procedure, both on the Internet and in person, and although many have reported improvements in their condition, this is one of the most dramatic cases I've seen/heard of.

It's hard to know what to make of these results. I don't think the patient in the videos above was "faking". Of course, I've no proof of that, but it would be a hell of an acting job if she was playing make-believe.

Naturally, it's thrilling to see such improvement, and I certainly wish that my procedure had gone as well (click here for info on my Liberation Procedure). From a scientific and medical standpoint, though, it's difficult to understand the mechanism behind the improvements depicted in the videos.

Certainly, less than 24 hours after the procedure, the reversal of nerve damage could not account for such a fast turnaround of symptoms. Nerve cells simply don't heal that quickly, and if damaged enough, they do not heal at all. I think it's safe to rule out nerve regeneration as being responsible for the improvements seen above.

The only other explanation I can come up with is that the opening of the patient's jugular vein had a remarkable anti-inflammatory effect on her CNS, which would mean that most of her problems were caused by inflammation, rather than actual nerve damage. Steroids are given to MS patients because of their powerful anti-inflammatory properties, and in some patients the beneficial action of steroids can be quite rapid, but not nearly as fast or as powerful as those that we see in the above videos. It generally takes cells at least a few days to recover from inflammation, so this solution too is problematic.

Dr. Sclafani, who did my procedure, reports that some of his other Liberation Procedure patients displayed surprising improvements soon after the procedure, but that in many cases these improvements were short-lived. Dr. Sclafani's sample size is small, though, so not much can really be read into them.

Whatever the reasons for the startling results seen in Denise's videos, I certainly hope she has lasting benefits, and continued improvement in her condition. As more and more research gets done on CCSVI, answers to the many questions surrounding the theory should start coming in.

Full-scale trials of the Liberation Procedure will be getting started this summer, and recently the government of Kuwait announced that all Kuwaiti MS patients will undergo the procedure, paid for by the state-funded medical system (click here for info). Kuwait has some 5000 MS patients, and it's expected that 10 patients per week will be getting "liberated".

Within several months, we should start getting some hard data regarding the effectiveness of treatment and the validity of CCSVI. For hundreds of thousands of MS patients, this data cannot come too soon...

IMPORTANT UPDATE: Wheelchair Kamikaze reader (and good friend) Bestadmom posted an alarming update on Denise's condition, which deteriorated about a week after her procedure. I'll include a brief summary of what happened here, and you can read a full account of the problems Denise encountered (in her own words) by clicking on the comments link, below, and reading Bestadmom's very informative post.

In a nutshell, Denise's condition reverted back to her "pre-liberation" days, with a sudden onset of her old symptoms. A return trip to the hospital where she had her liberation done showed that the stents that had originally been implanted during her procedure had restenosed and had to be removed (I was not previously aware that stents could be removed). A new set of stents was put in place (based on her account, it seems that four new stents in total were implanted), and the situation must have been dicey, since a neurosurgical team was put on standby.

The second procedure seems to have been pretty rough on Denise, but she is reporting that her symptoms do appear to be resolving once again.

Denise's experience is an enlightening example of both the promise and perils of the current CCSVI situation. Clearly, CCSVI offers the MS population real reason for hope, but the study of CCSVI, and its treatment, are still in their infancies. Techniques and materials need to be refined and developed specifically for the purpose of intervening in the array of venous blockages that have come to be known as CCSVI. This can only happen under the auspices of scientifically valid trials, whose progress can seem agonizingly slow for a patient suffering from progressive and debilitating neurologic disease.

Discretion is often the better part of valor, and it's very easy to allow hope to eclipse reason when one is staring at the dark at the end of the tunnel. Each of us needs to make their own determination of their tolerance for risk, but as more and more is learned about CCSVI, and its treatment, the risk profile associated with CCSVI should decline considerably. As previously stated, the next 6 to 12 months should be very telling.

Wheelchair Kamikaze Live on Internet Radio, This Saturday, 8 PM

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I've been invited to be a guest on "Global CCSVI Radio", a one-hour streaming Internet radio show that will be presented this Saturday, May 8, at 8 PM, New York time. As the name of the show indicates, we'll be discussing CCSVI and my experiences with the Liberation Procedure.

The show has a call-in format, so if you want to say "hi" you can dial the number provided on the Internet radio web page, and as an added bonus you can ask me just about anything you want to, but preferably something regarding CCSVI. The host of the show requested a list of questions I'd like to be asked, and I told him that I thought I'd be okay just winging it. I'm an adrenaline junkie, what can I say?...

So, now you'll get a chance to hear if I speak as well as I write. Don't worry, me talk good words. Unless I'm hit with one of my "spells", during which I can only communicate by singing like Ethel Merman. Sure am glad I got my hair cut yesterday, I definitely want to look my best on the radio...

Click here for link to Global CCSVI Radio website.

Actually, now that I think about it, you've probably all heard me speak on the Wheelchair Kamikaze videos. I know it must come as a shock, but that's not a professional voiceover talent on those videos, it's just little old me...