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Over the last month or so, there’s been a rising crescendo of concern among MS patients about the possible link between the newly approved oral MS drug Tecfidera (formally known as BG 12) and the deadly brain infection PML (Progressive Multifocal Leukoencephalopathy). I’ve received many anxious emails on the subject, and Internet MS forums and Facebook pages are rife with alarm over the perceived recent spate of bad Tecfidera news. As long-time readers of this blog know, I’m not a big fan of Big Pharma, to say the least. In fact, I hold them in regard only slightly higher than the New York Yankees, who I am convinced are the essence of evil incarnate on earth. But I am also not a big fan of fear mongering, and when reviewed objectively, the facts behind the alleged link between Tecfidera and PML simply don’t warrant the level of anxiety recent reports have fomented. In fact, it seems that rivalries in the Big Pharma sandbox may be playing a role in all the hyperbole, but more on that later. As most MSer are aware, PML is a brain infection that most often occurs in patients experiencing severe immunosuppression, such as those suffering from HIV/AIDS. In the context of MS, the infection is most closely linked to the drug Tysabri, whose mechanism of action often reduces immune system surveillance of the central nervous system quite drastically, opening up the possibility of opportunistic infection by the JC virus, which causes PML. Of course, it is this same mechanism of action that makes Tysabri so effective (the latest figures indicate that Tysabri therapy results in an 81% reduction in relapses, a 64% reduction in disease progression, and one in three RRMS patients appear to be free of disease activity for a prolonged period of time – click here for an exhaustive breakdown of Tysabri, its effectiveness, and PML). Despite Tysabri’s efficacy, PML is a real concern for those taking it, as 347 Tysabri patients have contracted the potentially deadly infection (approximately 120,000 patients are currently taking the drug). Recently, it was revealed that four cases of PML occurred in German patients taking the psoriasis drug Fumaderm, from which Tecfidera was derived. It’s important to note that although the two drugs are similar, they are not identical. Fumaderm is a compound of dimethyl fumarate and three other related chemicals. Tecfidera is made only of dimethyl fumarate. Fumaderm has been used to treat psoriasis in Germany and some other European countries for about 20 years, with much success (click here), and is generally considered to have a benign side effect profile. Both Tecfidera and Fumaderm do have immunosuppressive properties. In Tecfidera’s phase 3 DEFINE trial, it was found that the drug reduced lymphocyte counts in treated patients by about 28%. Lymphocytes are immune system cells whose mission it is to combat infection. These same cells are implicated in the MS disease process, and it is this depressive effect on lymphocytes that could well account for Tecfidera’s abity to fight the symptoms of MS. However, 4% of trial subjects (1 in 25) experienced a more severe form of lymphopenia (the medical name for a reduction in lymphocyte counts) which could make them vulnerable to opportunistic infections, requiring them to cease taking the drug. Recovery of lymphocyte counts after cessation of Tecfidera should be quite robust, based on  years of experience with Fumaderm. (Click here for the entire DEFINE trial report) A look at the four Fumaderm PML cases is quite revealing (click here.-site requires free membership, well worth it). In one case, the patient was not actually taking Fumaderm, but a version of the drug made by a compounding pharmacy which included a chemical not found in Fumaderm, which could have resulted in a formulation more potent or otherwise problematic than the factory produced drug. Another patient had sarcoidosis, a potentially deadly autoimmune disease, and had previously been treated with powerful immunosuppressive drugs. A third Fumaderm PML patient had cancer, and had been treated with Efalizumab, a drug in the same family as Tysabri that has a known risk of PML. Two of the Fumaderm PML patients had severely depressed lymphocyte counts for two and five years respectively before developing PML. In Germany, the prescribing guidelines for Fumaderm require that patients get blood tests done to check cell counts every month for the first six months they are on the drug, and then every two months thereafter to check for depleted lymphocyte counts. If patients are found to have significant lymphopenia, the guidelines call for dosages to be adjusted or the drug stopped altogether. Apparently, this regimen was not followed in these two cases, as the patients’ lymphopenia was somehow allowed to persist until they developed PML. It’s quite likely that had the lymphopenia been addressed far earlier, neither patient would have contracted PML. So, what should concerned patients take away from all of this? Tecfidera does depress white blood cell counts, and this effect quite likely plays a large role in its therapeutic value. However, 4% of treated patients can be expected to experience a more severe drop in lymphocyte counts, which could open them up to opportunistic infections like PML if left untreated for an extended period of time. That’s the bad news. The good news is that this drop in cell counts is easily detected by standard blood tests. Once such a decrease is detected, the drug can be stopped and any potential danger averted. For reasons that I can’t explain, the FDA guidelines for Tecfidera only require blood tests done before treatment is initiated and then once yearly for the duration of treatment. Based on the Tecfidera trial data, as well as the experience gathered from the 20 year history of Fumaderm use in Europe, the requirement of just one blood test a year seems misguided. I’m currently waiting for my insurance company to give me the okay to start Tecfidera, and my neurologist is requiring blood tests every other month for all of his Tecfidera patients. As noted above, two of the Fumaderm PML patients had severely depressed lymphocyte counts for two and five years, so blood testing every other month should provide more than ample opportunity to catch any potential problems well before they become very real concerns. I am by no means a doctor, just a well educated patient, but I would strongly advise all patients starting Tecfidera to insist that the neuro’s test their blood for lymphocyte counts at least every other month. Doing so should largely eliminate any chance of PML and set many a mind at ease. Despite its similarities to its cousin Fumaderm, Tecfidera is a brand-new drug, and although all signs point to it being a very safe medicine, I think it prudent to err on the side of caution. If your neuro resists, print out the DEFINE trial results and show him/her the data on lymphopenia, which can be found on the ninth page of the study. I always urge patients to educate themselves and to self advocate. Here’s the perfect opportunity to do both. In short, all of the recent concerns about Tecfidera and PML appear to be hugely overblown. To put things in context, Tysabri has seen 347 cases of PML in approximately 260,000 patient hours of drug exposure. Fumaderm has seen four cases of PML in approximately 180,000 hours of drug exposure. It’s been noted that Fumaderm is not generally given as a long-term therapy. However, at least one study researched psoriasis patients who have taken the drug for up to 14 years, with no apparent added risk associated with long-term use (click here). Based on the DEFINE trial results, the large majority of Tecfidera patients, 96%, should experience no problems whatsoever with lymphopenia. Regular blood testing should ensure that patients who do experience clinically significant drops in lymphocyte counts avoid any potential problems. The fact that Tecfidera is an oral drug that appears to be almost twice as effective as the injectable CRAB drugs, and may have neuroprotective properties to boot, should make it a very valuable weapon in the arsenal against MS. Like all of the current MS drugs, it is not a cure, but it will hopefully bring many patients some significant relief from this terrible disease. Using all of my self-control, I'll refrain from going on my usual rant about how the focus of pharmaceutically funded MS research on immune system suppression and modulation does absolutely nothing whatsoever in the effort to find a cure for the disease, but it doesn't. And that sucks. There, I said it. I couldn't help myself. Oh, I almost forgot. About those shenanigans in the Big Pharma sandbox: it appears that the reports of potential problems with Tecfidera were first brought to the attention of the FDA and the general public by Teva Pharmaceuticals, makers of Copaxone, one of the CRAB drugs that are currently considered the first-line drugs given to new MS patients (click here). Guess which MS drugs are most threatened by the potential success of Tecfidera? Yup, the CRABs, of which Copaxone is currently the most prescribed. With Copaxone sales of $4 billion (yes, billion) in 2012, Teva has about 4 billion reasons to try to delay Tecfidera’s entry into the market, or to stir up concern among the drug’s potential consumers. Not that I would ever accuse any Big Pharma players of partaking in such underhanded behavior. Gee, I sure hope the Yankees win the World Series… Not. (For a comprehensive overview of the how's and why's of Tecfidera, please see my previous post on the topic, by clicking here)

Animation of the structure of a section of DNA. The bases lie horizontally between the two spiraling strands. (Photo credit: Wikipedia) (Readers who receive these posts via email are advised that this essay contains a video, which cannot be viewed in the email version. Please go to the Wheelchair Kamikaze website (click here) to view the video…) I imagine the above headline might have furrowed a few eyebrows and crinkled some foreheads when first viewed by readers. HIV (the virus that causes AIDS) has nothing to do with MS, does it? Has Marc finally lost his last marble? Don’t MS patients have enough to worry about without having to contemplate AIDS? Yes, MS patients certainly do have enough to worry about, and no, the virus that causes AIDS has nothing to do with multiple sclerosis. HIV, though, is a retrovirus, and, strange as it might sound, there is increasing evidence that ancient retroviruses that have become incorporated into the human genome through millions of years of evolution may play a key role in the MS disease process. This might seem like something out of a science fiction novel, but this discovery of prehistoric viral material in human DNA has the potential to completely change the way we understand and treat MS and other diseases (including cancer), and could potentially lead to – dare I say it – a cure. There are currently two clinical trials underway attempting to shut down these ancient retroviruses in MS patients, and one of them uses a currently available anti-HIV drug. More on these trials a bit later, but first a little background, starting with a quick overview of virology. I know the mere prospect of “a quick overview of virology” is apt to make eyes glaze over throughout the Internet, but please bear with me, I’ll try to keep it as painless as possible. We’re all familiar with viruses, the little buggers that cause influenza, the common cold, and a many other diseases. Of course, bacteria also cause diseases, but viruses and bacteria, though both infectious agents, are very different beasties. Bacteria are living organisms, and when someone suffers a bacterial infection they can usually be treated with antibiotics, drugs which kill the guilty bacteria and thereby cure the patient. Antibiotics have no effect on viruses, though, because viruses aren’t alive, and therefore can’t be killed. Viruses are kind of like the zombies of the pathogen world, undead infectious agents that exist only to infect living things. The fact that viruses are “undead” is what makes viral diseases so hard to treat, and why we still don’t have a cure for the common cold. Unlike living bacteria, which can reproduce all on their own, undead viruses replicate by hijacking their victims’ cells and then using the resources within those cells to reproduce themselves. Most viruses kill the cells they invade by replicating to the point where the infected cells burst, releasing the reproduced viruses and thus spreading viral infection throughout the body. Another type of virus, though, called a retrovirus, actually inserts itself into the host cell’s DNA, and in effect become part of the organism they have infected, commandeering the host’s genetic material and cellular mechanisms to replicate themselves without destroying the cells they have invaded. This makes retroviral diseases (such as AIDS) extremely hard to treat, and coming up with ways to neutralize retroviruses has presented medical science with one of its most daunting challenges. Now, here comes the really strange part. When the Human Genome Project (click here) completed the incredibly complex task of mapping all of the genes contained in human DNA, it was discovered that 8% of our genetic material is comprised of the remnants of ancient retroviruses, many of which inserted themselves into our genetic material tens of millions of years ago during the evolutionary process, before humans were even human. These retroviruses were at one time in the distant past infectious, but have long since been rendered dormant, and it was initially thought that they were nothing more than “junk DNA”, left over genetic material that plays no role whatsoever in the development or functioning of a human being. These ancient retroviruses that are now part of the human genome were named Human Endogenous Retroviruses, or HERVs. They are a part of all of us, genetic remnants of our evolutionary history. Recent research into HERVs has provided tantalizing clues that rather than always remaining dormant, in certain circumstances these ancient viruses can be activated and may play a key role in many diseases, including multiple sclerosis, many autoimmune diseases, some cancers, and even schizophrenia (click here, here, here and here). The mechanism by which HERVs are activated are not fully understood, but the prevailing thought is that the presence of other viruses and environmental agents, such as Epstein-Barr virus (click here), the human herpesviruses (click here), and other environmental triggers, or a combination of these elements, may “wake” these bits of ancient viruses that are part of our DNA. Once activated, this ancient retroviral DNA can cause our own cells to secrete proteins and antigens that may identify the host cell as a hostile invader, or otherwise initiate critical disease processes. Within the last five years or so, it’s been established that virtually every MS patient is infected with Epstein-Barr virus (click here), which is best known for causing mononucleosis/glandular fever. I know, many of you are saying, “but I never had mononucleosis or glandular fever, so I don’t have EBV!” The fact is that in the majority of cases infection with Epstein-Barr virus does not result in Mono, but rather can present as a bad cold or flu, or can even be completely asymptomatic. Over 90% of the general population is infected with EBV, but, remarkably, it appears that 100% of MS patients carry the bug. MS researchers have long puzzled over the role EBV might play in the MS disease process, since EBV infection alone certainly can’t be the sole cause of MS, otherwise far more people would have multiple sclerosis. The link between EBV and HERVs could finally clear up this mystery, for if a long-term EBV infection can turn on ancient retroviruses embedded in the DNA of genetically susceptible people, the connection between EBV and MS might finally be understood (click here). Though the connection between HERVs and MS has yet to be proven, more and more evidence appears to be pointing in that direction (click here), and the hypothesis does pull together some of the “wildcard” factors that have confounded MS researchers for decades. Among these factors are indicators that there is an infectious component to MS, such as the existence of “MS clusters”, geographic locations where MS appears to run rampant among the local population (click here), and migratory studies which show that migration from areas of high MS to areas of low MS before the age of 15 decreases the risk of getting multiple sclerosis, with the reverse being true as well (click here). Through the years many possible infectious candidates have been proposed, to no avail, but if the HERVs theory is correct, it’s a combination of infectious agents, including some hiding in a patient’s own DNA, that may be responsible. Both EBV (which is itself a human herpesvirus) and retroviruses have proven to be extremely difficult to eradicate, as can be illustrated by the fight against HIV. HIV is a retrovirus, and although medical science has made great strides in developing drugs that keep HIV infection under control (deaths from AIDS have plummeted in the last decade), there is still no way to completely eradicate the virus from the body of an infected person. One anti-HIV drug, Raltegravir (brand name Isentress) (click here) has proven to be quite effective in combating HIV, though, and also shows promise as an anti-EBV weapon. A clinical trial now underway at Queen Mary University in London, England, called be INSPIRE trial (click here), is attempting to use Raltegravir to treat MS patients. Researchers hope that the drug will deactivate any activated retroviral material in the DNA of MS patients, while perhaps also combating EBV, and thus stop multiple sclerosis in its tracks. Another group of researchers in Switzerland are trying to accomplish the same outcome using an experimental drug that targets a protein on a specific HERV that is thought to be directly connected with MS, which has been dubbed the Multiple Sclerosis Associated Retrovirus, or MSRV (click here). This is a small, 10 person Phase 2 trial whose primary goal is to establish the safety of the experimental drug being tested. Results from the INSPIRE trial, which is just getting underway, are not expected until August, 2014, and the results from the Swiss trial are expected in July of this year. It’s impossible to overstate the potential that this research has to completely reshape the multiple sclerosis landscape, with vast implications impacting the quest to wipe out many other horrendous diseases as well. If indeed prehistoric viruses embedded within our own DNA are at work driving the MS disease process, shutting down these viruses could amount to a cure. Yes, a cure for multiple sclerosis! Though it may be hard to believe, there is precious little work being done elsewhere to uncover the roots of MS, as so much research time and money is devoted towards finding newer and more effective (and more profitable) ways to suppress the aberrant immune response that is seen in the disease, a response that is in fact a symptom of some as yet unknown underlying cause. All of the current crop of MS drugs, and the vast majority of those in the experimental pipeline, either modulate or suppress the immune system, a mechanism of action which can sometimes dramatically improve the quality of life of RRMS patients, but will never do anything to cure multiple sclerosis. The research going on in London and Switzerland at last holds out hope for a cure, and represent a radical rethinking of the cause of many of the diseases that plague mankind. My intuition and instincts tell me that these research scientists are onto something, and it’s something potentially huge. It’s long been known that genetics play a role in MS, and it has also long been suspected that infectious agents are at work. The idea that Human Endogenous Retroviruses, bits of viruses that are in a very real way a part of us, encoded into our DNA, could play a key role in the MS disease process ties together both of these observations, as well as several others. The evidence to support this idea is mounting, and to me this hypothesis feels right in a way that no other MS related theory I’ve come across has before. Of course, you can (and probably should) take my “gut feelings” with a grain of salt, but I find myself brimming with enthusiasm that the science of treating MS is finally moving in the right direction. Of course, as I’ve often cautioned before, it’s vital not to let hope eclipse reason, and this research might well lead to nothing. But, somehow, I just don’t think that it will… Here’s a terrific video presentation by one of the lead researchers involved in the INSPIRE trial, which does a great job of explaining the research and the ideas behind it in a very accessible, easy to understand manner. I urge all readers to watch this video, as the information it contains has tremendous potential…

(Please note, if you receive Wheelchair Kamikaze via email, the following essay contains a video clip which can only be viewed on the WK website (click here). Unfortunately, video clips cannot be embedded in the email version of these essays.) My wife attends a monthly caregiver support group, though I can’t imagine why, since I’m such a prince and always a tremendous pleasure to be around. Be that as it may, Karen tells me that many of the other caregivers in the group talk about the tremendous amount of anger expressed by their MS stricken partners, something that came as a surprise to her, since I’m generally not a very angry person. I’ve always been slow to anger, but if anything could get me angry, having to deal with MS and all of attendant crap that comes along with it should do the trick. So, this got me thinking, am I really not angry in the face of this flying shit storm, or is my anger manifesting as something else? After literally decades of psychotherapy (my enshrinement in the psychotherapy patient Hall of Fame is a cinch), I’ve attained a fair bit of self-knowledge and awareness, and I know that I’m not comfortable expressing or even acknowledging anger. Though I can at times be a sarcastic son of a bitch (and what is sarcasm but anger buffered by humor), I’ve always been harder on myself than anybody else. Not that I’ve ever been some milquetoast wimp who wouldn’t stand up for himself, but I’ve rarely done so loudly, with nostrils flaring, even when I probably should have – though I must admit I have had my moments. In my personal and professional life I’ve encountered my share of jackass bullies who are the black to my white, screaming, shouting, and belittling their way through existence, but I’ve always filed these folks away in a mental folder marked “asshole”, and chosen, as much as possible, to simply ignore them. I clearly have a distaste for outward displays of anger in both myself and others, and I wonder if this aversion has led me to avoid anger to the point where I sometimes no longer recognize the emotion in myself, even when it might be the most appropriate response. Certainly, being hit with a chronically creeping paralysis that forces you to watch yourself disappear by inches is plenty of reason to get a mightily ticked off, even if there isn’t anybody or anything on which to focus such wrath other than the universe at large. I mean, WTF, there are serial rapists, pedophiles, and mass murderers walking around healthy as horses, and I get stuck with this crap? I’m fully aware that we’ve all done things that would make our mothers blanch to have borne us, but there is plenty of human detritus out there much more deserving of paralysis, spasticity, and all of the other pleasures of this freaking disease than I. Luck of the draw I tell myself, you simply got dealt a bad hand, but sometimes it’s pretty damned hard not to feel singled out, to feel like the universe ate some bad Mexican food and then decided to cop a squat, take aim, and let rip a big sloppy dump right on top of you. For whatever reason, almost every MSer I personally know seems to be a pretty good egg, as if the multiple sclerosis bug only bites the butts of nice people. Who knows, maybe some of my new friends were flaming assholes before getting struck with MS, and the disease itself is so traumatizing and humbling that it can take the edge off of even the biggest fucktard. I’m pretty good judge of character, though, and when it comes to personalities I’ve learned that it’s awfully hard to polish a turd. Hey, wait a minute, what’s this I’m starting to feel? By gosh, could it be… ANGER?! Well, why the fuck not, it’s my blog and I’ll rant if I want to, and I invite anybody reading this to rant along with me… Not only am I sick, but I’m sick of being sick. I’m sick of dragging around a useless right side as if it were a carcass, even while my left side continues to weaken. I’m sick of relying on the kindness of others to cut my food, zipper my jacket, and button my pants. I’m sick of the prospect of taking a shower being as ominous as the prospect of taking a trip to the gallows. I'm sick of the fucking wheelchair. I’m sick of only being able to sleep in two-hour spurts because whatever position I’m finally able to fall asleep in invariably becomes so uncomfortable that it interrupts my dreams. I’m sick of muscle spasms that make my limbs shudder and shake as if possessed by demons. I’m sick of always being so goddamned fatigued that calling what I feel “fatigue” is like calling the Queen Mary a dinghy. I’m sick of the meds and I’m sick of the lack of meds. I’m sick of having to be brave, I’m sick of always seeking the peace within, and I’m sick of not having the freedom to let my mind wander, because it could very well wander into a real-life horror story too demented to be conjured up even by Edgar Allen Poe. I’m sick of watching my dwindling abilities turn into disabilities, of looking on helplessly as my world gets smaller, of watching the walls creep in. So much for my being an inspiration, I guess. Not only is the disease itself as much fun as genital mutilation, but the universe it plunges you into isn’t exactly Candyland, either. From incompetent and uncaring healthcare professionals, to moneygrubbing pharmaceutical companies, to the unadulterated evil that is the health insurance industry, the hostile landscape a sick person must navigate is filled with enough pitfalls and landmines to make the sanest among us stark raving mad. One might think that suffering from a chronic illness would confer some kind of cosmic Get Out Of Jail Free card, but no dice. I am extremely lucky in that I truly like my neurologist and his office staff, but some of the other doctors and their assistants that I’ve met in my long ongoing quest to get a definitive diagnosis call into question the notion that possessing a beating heart is required to sustain life. I’m quite sure some of the insurance reps I’ve engaged in verbal battle with were something other than human, instead quite likely undead ghouls straight off of the set of The Walking Dead, whose deepest desire was to somehow reach through the phone and eat my brain, or what’s left of it. And the pharmaceutical companies, well, aside from bribing doctors, falsifying research, marketing drugs and devices that they know are dangerous, and coming up with cures for absolutely nothing, they are doing a bang up job. Huzzah to them. Before my diagnosis I was as taken in as anybody by the image of the gleaming whizbang super high-tech modern medicine machine. According to all the PR, it seemed like miracles were being performed daily. Once inside the belly of the beast, though, the picture changes dramatically. Sure, modern medicine has tamed a handful of terrible maladies, but far more have it completely befuddled, although those who populate its gleaming halls would never admit to such. When I was diagnosed 10 years ago I was told that the cure for MS would be had within 10 years, and guess what? People who are being diagnosed today are being told exactly the same thing. It’s awfully hard to cure a disease when nobody is actually looking for the cure, and the sad truth is that very little research is being done to look for the fucking cure. Why? Because MS, and many diseases like it, have become cash cows, industries unto themselves, generating billions and billions of dollars and employing thousands and thousands of people. Due to expanding budget deficits and the notion that government can do no good, the bulk of medical research has been handed over to the pharmaceutical companies, which are almost all publicly traded for-profit entities whose primary concern, by law, is their bottom line. Curing sick people would turn them into healthy people, and healthy people don’t buy drugs. Keeping sick people alive and reliant on exorbitantly priced pharmaceuticals is the ticket to endless profits. So we’ve evolved a twisted system in which patients are seen first as consumers, flocks of geese laying golden eggs just waiting to be plucked. And fucked, but not in the good way. I apologize, dear readers, for the dour nature of this post, which I realize has turned into a diatribe of diabolical proportions. But you know what? It feels good to let loose all the trials, tribulations, and frustrations that I know we the afflicted share and deal with on a minute to minute basis. Indeed, there is a time to every season, and a time for every purpose under heaven. I decree that right now is my time to raise up a huge middle finger to everything that has transpired these last 15 years since my first symptoms started cropping up, lost years that I will never get back even if I were to wake up miraculously cured tomorrow, which we all know simply is not going to happen. This disease smashes dreams, breaks hearts, and does its best to trample hope. But kindle hope we must, as hope is the only weapon we can effectively deploy against all of the insults described above, and without which we are truly lost. Still, it’s possible to harbor hope but be fully cognizant of the realities of the situation, realities that perhaps will only change when we the patients rise as one with a righteous fury to demand a different way of doing things. For inspiration, I leave you with the following clip from one of my favorite movies, and I urge everyone to follow the on-screen action and turn this viewing into a participatory event. I promise, it’ll feel good, like primal scream therapy. Here’s Peter Finch, as Howard Beale, the mad prophet of the airwaves, in the 1976 movie “Network”. Mr. Finch won a posthumous Oscar for his performance in the film, and it’s frightening how little has changed in the nearly 40 years since it first hit the silver screen… RIP Annette Funicello and the victims in Boston.

Finally it's here, never have owned an Apple device, not interested in a walled garden eco system and the price of their hardware, ridiculous! I am a linux user so that explains it all really, Google support linux quite well, maybe not as much as some would like, but some in the linux community despise everything non open source, that's just how it is, no big deal :) Oh and let's not get started on Google drive for linux it was "coming soon" 12 months ago, there is a tag on G+ #drive4linux, there are rumours that's it's being worked on, I'll believe it when I see it lol.I digress, Google Music is cool, play your music from anywhere on any device, not just Android, it is also Cloud storage for all the Digital Music you already own, you can upload your existing tracks from your computer, it does a scan and match thing so you won't be uploading all of your music, only if it can't be matched. They seem to add cover art automatically if it isn't already in the original album you uploaded, I think that's how it works, although I could be wrong, I'm fairly sure though that some of my uploaded cover art has been changed, not a big deal for me, it might just be a different countries cover art, or I could be dreaming or stoned....I've had Google Music for at least 12 months from memory, this required initially signing up while running through a VPN service, so it looked like I was in the good ole' US of A, eh, such is life. I occasionally use a VPN provider so I already had an account, I know of at least one VPN provider for Android and it's an App you can get from the Play Store, worked quite well when I tried it, it's called Tunnel Bear, it's free so you can't go wrong ;)Even if you aren't an online music buyer, (you obviously buy all your music on CD and rip it to MP3 format, or FLAC if you have any sense lol) the cloud storage aspect is excellent, they say you can upload 20,000 songs with a maximum of 300MB per each individual song (source), so that's quite a lot of space and the added bonus is that songs bought from the Play Store don't count towards your quota, good stuff!So give it a go, it's free :)

Last week, the FDA approved Biogen’s long-awaited oral MS drug, Tecfidera (formally known as BG 12). Naturally, the news was featured most prominently in the financial sections of newspapers/websites (click here), as an uptick in shareholder value is much more newsworthy than a potentially breakthrough drug that could help hundreds of thousands of patients suffering from a heinous disease. Much was also reported about the drug's yearly price of $54,900, which is actually considered reasonable in the demented world of MS drug pricing. Such are the priorities of our whacked out society. Okay, social commentary over… Tecfidera’s active ingredient is dimethyl fumarate (DMF – click here), a derivative of fumaric acid, a naturally occurring substance that can be found in mushrooms, lichens, and moss. DMF was first used for medicinal purposes in a highly effective anti-psoriasis drug called Fumaderm, which has been marketed in Germany since 1994. It’s important to note that Tecfidera and Fumaderm are not identical compounds, which must be kept in mind when comparing the actions and side effects of the two drugs. Much might be inferred by reviewing the history of Fumaderm, but trying to make precise, direct comparisons could well in lead to erroneous conclusions. More on that later… The release of Tecfidera has been much anticipated in the MS community, as clinical trials showed the pill to be significantly more effective in reducing relapses and slowing the progression of multiple sclerosis disability than the current frontline MS treatments (Copaxone, Rebif, Avonex, and Betaseron – all injectables), while its side effect profile appears to be quite mild when compared to many of the other MS disease modifying treatments. Tecfidera joins Gilenya and Aubagio as the only MS treatments currently in pill form. In clinical trials, Gilenya was more effective in terms of reducing relapse rates, but concerns about potentially serious side effects (dangerously low blood pressure and pulse rates, potential for opportunistic infections) have kept the drug from reaching "blockbuster" status. There are some indications that Gilenya may have neuroprotective properties, and it is currently undergoing trials for use against Primary Progressive Multiple Sclerosis (click here). It is one of the few drugs being tested for the progressive forms of the disease. In trials, Aubagio proved to be just about as effective as the CRAB drugs in reducing relapses, and has exhibited some potential in inhibiting disease progression, but the drug comes with two black box warnings (the strongest issued by the FDA) concerning liver toxicity and the possibility that it can cause major birth defects (click here). Tecfidera’s comparatively mild side effect profile, which is comprised primarily of flushing of the skin and gastric disturbances, its high rate of efficacy, and oral dosing have led to the expectation that it will soon be a leader in the multiple sclerosis drug market. Tecfidera’s mechanism of action, which is not fully understood (something that is not uncommon, the action of many pharmaceuticals are not fully understood), appears to be threefold. The drug exhibits immunomodulatory, anti-inflammatory, and antioxidant properties, the combination of which theoretically affords the compound its potency. In two large-scale studies, called DEFINE and CONFIRM, Tecfidera reduced relapse rates by approximately 50% over placebo, and reduced the progression of disability by about 30%. By comparison, the CRAB drugs reduce relapse rates by about 35%, and Tysabri cuts relapses about 65%. Whether these drugs impact disease progression has yet to be firmly established. Much of the excitement surrounding Tecfidera involves the prospect that, in addition to its disease modifying characteristics, the drug may be neuroprotective. Neuroprotection is one of the holy grails of MS research. If the cells of the central nervous system can be protected from the ravages of multiple sclerosis, then the progression of the disease can be inhibited. The notion that Tecfidera may be neuroprotective is based on the fact that one of the drug’s supposed mechanisms of action is the activation of Nrf2 pathways in the human body. Nrf2 (click here) is simply a protein that exists within every human cell, inoperative until it is kicked into action by a Nrf2 activator (think of it like a bottle rocket – until lit, it sits there doing nothing, but once lit (activated) it zooms into action). Once activated, Nrf2 migrates into the nucleus of the cell and bonds to the DNA within, initiating the production of powerful antioxidants. If Nrf2 was a bottle rocket, it’s thought that Tecfidera could initiate the process that lights its fuse. Antioxidants (the good guys) are the body’s defense against free radicals (the bad guys), cell damaging oxygen molecules that are released during the biological process of turning food into energy, much like noxious exhaust fumes are released by an automobile engine turning gasoline into energy. Once free radicals are released they act like wrecking balls, smashing through cell walls and inflicting injury. The process by which free radicals do damage to the body’s tissues is known as oxidative stress, which is believed to be one of the primary drivers of MS disease progression, as well as a factor in many other diseases (click here). Therefore, by combating oxidative stress through Nrf2 activation, Tecfidera may protect central nervous system tissues from damage by free radicals, which would be a very good thing. Some Facebook pages and websites, including a previous post on Wheelchair Kamikaze (click here), have mistakenly equated Tecfidera with a nutraceutical product called Protandim (click here). In laboratory tests, Protandim has proven to be a powerful Nrf2 activator, a quality it does share with Tecfidera. However, Tecfidera’s mechanism of action appears to be much more complex and wide-ranging, and not confined only to Nrf2 activation. It also effects cytokines (chemical signals that influence the inflammatory process – click here), and down regulates the immune system. This down regulation of the immune system may in fact be the primary driver of Tecfidera’s effectiveness. According to the official report detailing the results of the DEFINE trial (click here), which appeared in the New England Journal of Medicine, “It is difficult to determine whether the therapeutic effect of BG 12 stems predominantly from immunomodulatory mechanisms or from neuroprotective mechanisms.” Now back to Fumaderm, Tecfidera’s very effective German anti-psoriasis cousin. Fumaderm's efficacy in treating psoriasis, an autoimmune disease, is well documented, with 50% of the patients taking it achieving at least 70% improvement in their condition. Since Fumaderm’s primary component, like Tecfidera, is dimethyl fumarate, its side effect profile is similar to Tecfidera’s. Through 20 years of use, the most prevalent Fumaderm side effects have been gastric disturbances (stomach ache, vomiting, and diarrhea) and flushing of the skin, which, according to a paper prepared by Britain’s NHS (click here), can lead to discontinuance and/or noncompliance in 30% to 40% of patients. In the Tecfidera drug trials, though, dropout rates were negligible, with no significant difference between those patients taking the actual drug and those on placebo. Gastric disturbances and flushing of the skin were the most commonly reported side effects in the Tecfidera trials, but appeared to be manageable and diminished significantly after one month on the therapy. This discrepancy between the patient experience with Fumaderm versus Tecfidera is likely due to the different chemical makeup of the two compounds (Tecfidera is composed only of DMF, while Fumaderm includes DMF and some other derivatives of fumaric acid), and/or to differences in dosing, as patients on Fumaderm generally take a higher dose of DMF than will be given to Tecfidera users. Still, only real world experience will tell us how troublesome these side effects prove to be. Another effect seen in both drugs is leukopenia, a reduction in white blood cell counts. This condition is accompanied by lymphopenia, a reduction in specific white blood cells, including B and T cells, which are the targets of many of the current MS drugs (Tysabri, Rituxan, Gilenya, Aubagio). This suppression of immune system cells may play a part in the two drugs' effectiveness, but can be problematic if the cell counts get too low, as this might open the patient up to opportunistic infections, although none were seen during the clinical trials. Tecfidera induced lymphopenia and leukopenia are reversible with cessation of drug therapy. In its 20 years on the German market, comprising over 170,000 patient hours, Fumaderm has been linked to four cases of PML (click here), the opportunistic brain infection associated with Tysabri. While this may initially seem troublesome, it’s important to keep in mind that these cases occurred over a very long time period, and at least one of these patients was using other powerful immunosuppressive drugs. Generally, opportunistic infections are not seen in patients using Fumaderm. During the Tecfidera DEFINE trial, white cell and lymphocyte cell counts dropped an average of 10% and 28% respectively, which could very well play a role in the drug’s efficacy. Importantly, though, over the two-year run of the trial, no instances of opportunistic infections were reported. It was noted, however, that 4% of trial patients experienced a more serious drop in cell counts (this info can be found on page 1106, paragraph 3 in the NEJM article – click here). In Germany, Fumaderm patients are required to have blood tests once a month for the first six months they are on the therapy, and then every other month thereafter, to keep an eye on cell counts The FDA guidelines for Tecfidera only call for yearly blood tests, and though I’m no doctor, this recommendation seems a bit questionable. Even though no opportunistic infections were noted in the two Tecfidera trials, why not err on the side of caution? We’re only talking about simple blood tests, which could head off potential problems before they get started. Some other rare but potentially serious side effects noted in the Tecfidera study were liver and kidney events, although most were mild and reversible. There were no reported incidences of kidney failure. Still, I would think, all the more reason for regular blood tests, especially since so many MS patients are on other drugs that can be liver or kidney toxic. So, what do I make of all this, as an educated patient? Tecfidera seems to be a very promising new drug for MS sufferers, one which might even help those with progressive disease due to its antioxidant, neuroprotective potential. I will very likely begin Tecfidera therapy sometime in the near future, even though my diagnosis is still uncertain and none of the other MS drugs have helped me. I’m encouraged by the fact that Tecfidera is related to a drug that is very effective in treating psoriasis, and has also anecdotally been noted to have a positive effect on a host of other diseases, including sarcoidosis and alopecia. I definitely show signs of some sort of systemic autoimmune activity, a condition against which Tecfidera’s mechanisms of action suggest might make it effective. Tecfidera’s clinical trials convincingly demonstrate it to be effective in treating RRMS. Whether you believe MS is an autoimmune disease or not, it’s indisputable that the immune system plays some significant role in the MS disease process, and Tecfidera’s combination of immunomodulation, anti-inflammatory action, and antioxidant activation should provide a potent mix to help tame the disease. We’ll have to see just how troublesome the gastric and skin flushing side effects turn out to be, although, as stated above, in the trials they appeared to drop off dramatically after the first month of therapy. Personally, if and when I do go on Tecfidera, I am going to insist on blood tests every 4-6 weeks, based on the study data concerning leukopenia and lymphopenia, as well as renal and hepatic toxicity. I’m on so many drugs that I rattle when I move, and I’ve learned to take nothing for granted. I’d suggest patients sharing similar concerns print out the New England Journal of Medicine DEFINE trial article linked to above and show the pertinent sections to their neurologist. The 4% rate of serious lymphopenia has not been publicized, as far as I can tell, and that alone should be reason for regular monitoring of blood counts. Better safe than sorry, especially when using a drug new to the market. Of course, that’s just my humble “I'm not a doctor” opinion… (Update: for more information on Tecfidera and PML, please see my latest post on the topic, by clicking here) Related articles

• FDA Approves New Multiple Sclerosis Treatment: Tecfidera (fda.gov)
• UPDATED: Biogen Idec rolls up FDA OK for blockbuster multiple sclerosis drug Tecfidera (fiercebiotech.com)
• Biogen Prices New MS Pill At $55K, Prepares For Marketing Battle (forbes.com)

(Photo credit: davidyuweb)(Please note: for those who receive these essays via email, this post contains videos which can only be viewed on the Wheelchair Kamikaze website) The last couple of weeks have been tough. Losing my friend George, The Greek from Detroit, really hit hard. I’ve never before suffered the premature loss of someone with whom I’ve been so close. Of course I’ve lost loved ones, but they’ve either been elderly, in which case there’s solace in the thought that they lived full lives, or folks for whom I’ve felt affection for but not the extremely close bonds shared with someone in my “inner circle”. The fact that George and I bonded over our shared struggle with a debilitating disease, and that his death was directly related to that illness, only serves to focus the despondency. Mourning is a strange process. For whom am I actually grieving? George is at rest, the despair he felt at the ravages of his multiple sclerosis ended. From that respect, at least, it would seem that those who knew him should be grateful that his long struggle is over. But I mourn for his life that was upended, and his life that could have been. I feel sorrow for all who will miss him, for all of those who held him dear. But most of all, if I’m completely honest, I mourn for me, for the fact that I’ll never again answer the phone and hear, “Kazmo, this disease fucking sucks!” Of course, I have other friends to talk to, but George’s tremendously emotional manner was contagious, eliciting, at least in me, a license to let rip with all of the foul miseries and mindbending fears that helplessly watching a creeping paralysis devour your body brews in your brainpan. Yes, I still manage to find some good in (almost) every day, but there were days in the past few years when a significant portion of the good I found was talking to George. Be that as it may, the world doesn’t stop spinning, the sun doesn’t stop rising, and life must go on. So here’s a collection of MS related items that aren’t too glum or weighty, but include a cause to rally around, some mindful artwork, a few helpful MS hints, and even a healthy dose of sex. What better to focus the mind back where it belongs, on the naughty bits. Believe me, George would approve… ♦ First up, a chance to help a fellow MSer and become a mini movie mogul, all in one fell swoop. Jason DaSilva is a young filmmaker whose work has been seen at film festivals around the world. About eight years ago, at the age of 25, he was struck with progressive MS and decided to turn his camera on himself. His new documentary, When I Walk, chronicles the first seven years of his struggle with PPMS in unflinching fashion, showing the effects of the disease warts and all even as it exposes the heart and soul of the man at the center of the storm. When the film opens, Jason is having some trouble walking; by its end he’s using a scooter full-time, his vision is increasingly affected, and the disease is attacking his hands. In between, we experience the physical and emotional roller coaster of MS as Jason searches for answers and possible cures, and though one might think this would make for gloomy subject matter, the film is an inspiring testament to Jason’s courage, the power of love, and the enduring nature of the human heart. Even as Jason’s body betrays him, he manages to find his soulmate, a woman special enough to love him despite all of the trepidation and uncertainties that come with MS. When I Walk had its premiere at the recent Sundance Film Festival, and received rave reviews (click here). Here’s the When I Walk trailer: So, it would seem all is well in When I Walk land, right? Unfortunately, that’s not the case. Though the film got a big reception at Sundance, it really needs to be seen in cities around the country and around the world. It shows the side of MS that the public rarely sees, not the sanitized version most often portrayed on television and in the news media, but the Full Monty of ever advancing disability and its effects on the body and mind, capturing the jumble of emotions of the human being trapped inside an increasingly faulty body. The realities of independent filmmaking today requires that filmmakers themselves raise the funds needed to get their works onto movie theater screens around the country, and Jason has started a Kickstarter campaign (click here) in an effort to do the necessary fund-raising. Kickstarter is a website allows individuals to contribute as little as one dollar to a wide variety of artistic, altruistic, or business endeavors. Jason’s goal is to raise $27,000 by April 3, and as of this writing has almost $19,000 to go. He’ll use the funds to do marketing, advertising, and promotion for the film, as well as pay for printing and duplication costs of the film and its trailer. I don’t think I’ve ever before made a direct plea for financial donations of any kind on Wheelchair Kamikaze, but I was lucky enough to get a chance to preview this film, and it really struck a chord. So please, if you’re able, chip in as little as one dollar to help kickstart When I Walk into a theater near you (click here), and thus help a fellow MSer tell his story and show the world the realities of living with MS and the courage it takes to battle the disease day in and day out. Thanks. ♦ Check out the cover of the March issue of the journal Neurology, one of the top medical journals in the world: Can you guess what lies at the heart of the striking piece of abstract art on the cover, called “Celebration”? I think you’ll be surprised to know that it’s (drumroll please)… My brain! Artist and MSer Elizabeth Jamison (click here to see a gallery of her work) uses MRI images to make her compelling etchings, and a few years ago I sent her several images from my MRIs and MRA’s (Magnetic Resonance Angiograms), one of which she transformed into the image that is right this moment gracing the cover of a journal sitting in the offices of neurologists all over the world. Pretty nifty, don’t you think? Elizabeth is herself an inspiration, as the MS that she’s suffered from for over 20 years has progressed to the point that she is now a quadriplegic. Still, she continues making her art, using a surrogate as her hands as she choreographs the artistic process. Her work is gaining attention worldwide, and will be featured in an exhibit in Barcelona next month. ♦ Here in the northern hemisphere, it’s almost spring, and if things go as planned, summer will soon follow. That means the temperatures will be rising, and many folks suffering from MS will be wilting. Heat sensitivity is a hallmark of multiple sclerosis and for many people with MS, myself included, warm temperatures are like kryptonite. Once the temperatures get much above 80°, I can literally feel the energy being drained from my body, and I start losing whatever functionality I’ve so far managed to retain. Strangely, when the temperatures soar, I seem to be negatively affected even if I stay inside my air-conditioned apartment. Defies logic, but it’s the truth. Fun fact: before the advent of the MRI, one of the methods used to diagnose MS was to place the patient in a hot bath and see if their symptoms got worse. So, what can a patient do to combat these summertime blues? There are many forms of cooling garments, from vests to headbands to scarves, available from a variety of manufacturers (click here). If you are an American person with MS who is in financial hardship, both the Multiple Sclerosis Association of America (click here) and the Multiple Sclerosis Foundation (click here) have programs offering cooling equipment to qualifying clients, free of charge. Don’t be shy, both groups do terrific work, and the heat of the summer will soon be upon us. ♦ Now, finally, the subject you’ve all been waiting for, sex. The Sexuality and Disability webpage (click here) is a comprehensive resource for all things having to do with, well, sexuality and disability. From information on sexual morality to the actual mechanics of sex when dealing with a disabled body to relationship issues to sexual violence, this site is a veritable almanac on sex, sexuality, and relationships for the disabled person. I especially love the modified handicapped icons that grace the site’s front page, which depict a person in a wheelchair and their partner in all sorts of imaginative hijinks. Must’ve been fun coming up those, although some look to be a bit treacherous… “Don Juan in a Wheelchair” (click here), an article from Salon.com, was written by a man with cerebral palsy, and explores his determination to lose his virginity. The article brought to mind two recent films that deal with similar subject matter, The Sessions and Scarlet Road. The Sessions is a terrific, touching film starring John Hawkes and Helen Hunt, which tells the real-life story of Mark O’Brien, a severely disabled man who was afflicted with polio in childhood. Because of the weakness in his muscles, Mr. O’Brien had to spend most of his time in an iron lung, except for stretches of three or four hours at a time when he could survive with the aid of a portable oxygen unit. His entire life was spent lying on his back; despite this, he was able to earn a degree in English, and worked as a writer and poet, managing to get out and about on a gurney wheeled around by an aide. The film takes up his story in 1988, when, at the age of 38, he decided he wanted to lose his virginity and contacted a registered sex therapist. The Sessions deals with its delicate subject in a frank, matter-of-fact manner, and is infused with humanity, humor, and beauty. Though hardly pornographic, the film doesn’t dance around the sexual nature its narrative, so if glimpses of nudity and straightforward talk of sexual subjects aren’t for you, this movie probably isn’t your cup of tea. Everyone else, though, can watch The Sessions on Amazon.com’s streaming video-on-demand service for $3.99 (click here). I recommend this film highly. It’s one of the best I’ve seen in a while. (Please note: I have a raging dislike for 90% of American films made after 1980, so this is high praise indeed. BTW, I’m not a snob, but I do have a degree in Film… Okay, maybe I’m a snob…) Scarlet Road is an Australian documentary that has received much acclaim, but, as far as I can tell, is so far not available for viewing in the USA. The film profiles a sex worker who specializes in catering to the disabled, and looks to be provocative and entertaining. I only wish I could see it. Here’s the trailer… With that, I’ll bid you a sweet adieu. The show must go on… RIP George Bokos

‘Things could be worse.’ With those words ringing in my ears as my embattled wounded feet hit the floor, I wonder to myself is this, my new mantra. Are these the words that will get me out of bed each day to battle on. No doubt my mantra will change as the landscape of this disease changes. What will never change is the battle, for that is how I feel. Each day I am at war, the enemy changes, Amber Aireyhttps://plus.google.com/113561197150607724891noreply@blogger.com1

I saw a Neurologist speak the other night. He explained that after deciding on Neurology, he opted for MS since there was so much promise.  One of the newer neurologists in our clinic once introduced herself to our MS Club and remarked what an exciting time it was to be in the field of MS and how she looked forward to meeting each one of us. I couldn’t help but feel unimportant as a person, but (as with the drug companies), so important as a specimen. Of course, on the ground, it’s not  as exciting and it’s not practical to wait for a cure.  Certainly,  we can be grateful that we know more about the disease, and have treatments that may help.  But for the most part, it’s on us and so we take our health into our own able hands and give it our best shot. That’s what we do here.

What is exciting, is taking not only our health, but our lives into our own control.  I can only speak for myself when I say that MS and OMS woke me out of my robotic and often painful existence.  I had always been gritting my teeth, slogging through work, relationships, marriage, kids, future career, family… and health. I only thought of diet,  exercise and taking care of myself mentally  in service of my career and some vague idea of the future.  I was putting my life on hold until retirement.

I believe that for the lucky amongst us, MS can be a wake up call and OMS the guide – it was for me.  I always recommend people read “Overcoming Multiple Sclerosis” cover to cover and  to try everything in it.  Don’t skip over the chapter on grief, do the meditation.  Read the recommended book lists and read biographies of inspirational people.

I decided from the beginning that I was going to live my life differently, fuller and made the following three vows:

1) Not wait to tell or show someone I loved them.

2) Not wait to live my life and wait for “someday”.

3) Say “no” when I needed to.

In practice, it means that while I’m still troubled by anxiety from time to time, I make my decisions and run with them.  One of my first decisions was that I was going to make my previously difficult marriage work or move on – but only after I knew I had done everything I could and left nothing unsaid.  This past month has been the turning point.

Committing and giving our best effort – it’s what we are doing with our health.  We don’t know for sure how it will work out,  but we can know we’re giving ourselves the best shot possible.   I suppose it may be an exciting time to have MS. At least it can be if, as George recommends, you do all you can.

I love to stretch.  I love to sit on the bed, fold myself in half while holding my toes, and strive to touch my chest to my knees. And then when I have reached as far as I can, I love it when somebody gently pushes on my back and causes me to stretch even further. I've been told that I am “freakishly limber.” Maybe so. What I am sure of is that I enjoy stretching and being physically flexible.I like to think of myself as being flexible in other ways too. Being flexible in my personal life and relationships with others is even more important.The dictionary defines flexible as “able to bend without breaking” and “able to adapt to new situations.” I think that these are important life skills. One never knows what life will bring you and the ability to adapt or adjust may be the difference between living a happy life or not.How does someone become more flexible? Stretching. Taking yoga classes. Or, most importantly, “learning to bend without breaking.”I know that at times I can be stubborn, less than “flexible.” But if I take a minute, breathe in and breathe out, then most often I will be more flexible. I also often ask myself the question “what difference will this make in a day, week, month, or year?” If it won't matter or won't matter much, it is easier to be more flexible.Being in a wheelchair requires me to be more flexible. Since I depend on others for so many things, I have to consider their needs when I am asking for help with mine. I don't mind that and perhaps I have become more flexible because of it.I am not suggesting that you get in a wheelchair and become dependent on others for your needs in order to become more flexible. What I am saying is that learning to consider the needs of others may help in becoming more flexible.I don't know if one can learn to bend all the ways that I do. What I do know is that we can all do better at taking a breath, considering the needs of others and becoming more flexible.

 Participate. Make a difference. Live a life that matters.

About two and half years ago I was hospitalized with very high fevers. It turned out I had a bizarre case of meningitis, which of course was extremely debilitating and terribly frightening, greatly exacerbating my very heat sensitive creeping paralysis. A short time after I returned home from the hospital, I was greeted with a great big gift basket, filled with all kinds of delicious goodies. To my immense surprise, the basket came from a man in Detroit that I had met only a few months earlier, and had exchanged several emails and phone calls with. He was a fellow MS sufferer, and I had little inkling at the time that we would soon develop a long-distance connection that would eventually transcend friendship and approach something akin to brotherhood. The man who sent that basket was George Bokos, the self-described “Greek From Detroit”, who died early last Sunday morning. Although it seems almost de rigueur to offer such platitudes in this kind of essay, in George’s case the following are the absolute truth: he was one of the kindest, gentlest, most generous and good-natured people that it’s ever been my privilege to know. He was smart and funny, a master of sarcasm. In his own way, for better or worse, he was a force of nature, a tremendously emotional man whose heart was his guiding beacon. His friendship was a gift, his loss a heartbreak, and I will miss him as long as I draw breath. The burdens and constraints imposed by the miserable beast called multiple sclerosis simply became too much for George to bear, and he exited this life on his own terms. The farewell note he left on his blog (click here), though quite forthcoming, only hints at the anguish he suffered. The disease and its wicked gravity robbed him of all he held dear, leaving him bereft of joy, a man whose sense of self was too enmeshed with his physicality to submit to an existence spent bedridden. The ravages of multiple sclerosis broke his tremendous heart and shattered his beneficent spirit. His decline was precipitous, a cruel freefall that proved impossible to break. I first met George almost exactly 3 years ago, in the office of the Interventional Radiologist who performed both of our CCSVI procedures. I was there with my wife for pre-procedure testing, and George, having had his procedure the previous day, was awaiting his follow-up examination, accompanied by his mom, Hilda. The doctor, who is an avid amateur photographer, hadn’t yet arrived, and I was talking to the office manager, telling her of my photographic efforts using a camera mounted to the arm of my wheelchair. I’d been writing this blog for about a year, and when Hilda overheard my conversation with the office manager, she exclaimed, “Oh my, are you the Wheelchair Kamikaze?” Stunned, I stammered “Yes”, and in a blink Hilda was upon me, showering me with hugs and kisses, thanking me for writing about my life with MS and whatever part I played in helping to bring CCSVI to the attention of the MS population. The four of us had a brief but lively conversation, and then we were on our respective ways. I was tickled by the encounter, thinking it one of those strange bits of serendipity that life sometimes bestows upon us, completely unaware of the bond that George and I would eventually form. Unfortunately, neither of us benefited from CCSVI treatment. At the time, my disease was fairly advanced and had already forced me to rely on a wheelchair, but George’s MS was far less noticeable, in fact, almost invisible. In the relatively short three years since, MS delivered an unrelenting series of hammer blows to George. It seemed the more he fought, the worse things became, like a man frantically struggling to free himself from a pit of quicksand only to find his every effort resulting in his getting dragged further down. He was tortured by terrible spasticity in his torso, and spasms so painful that at the end he all he could do was lie in bed on his side. He tried to find relief by getting a baclofen pump implanted, but this, like all of his other efforts to save himself, only resulted in a cascade of increasingly dire problems, a grueling saga he powerfully recounted on his blog (click here) Please note, I know many patients who have had fantastic success with the baclofen pump, and George's experience with it shouldn't be considered the norm. Through it all, George and I became a two-person support group, usually speaking on the telephone at least once a week, sometimes more. We shared some tears, but much more often laughter, both of us marveling at the mind-boggling absurdities of the hand the fates had dealt us. George had a keen sense of humor, and a quick and sharp wit. Together, we would pick apart our miseries as only can be done by those who share them, reveling in the freedom of not needing to maintain a stiff upper lip in each other’s company. Life with MS is filled with irony and paradox, and though many of our conversations began with a recounting of tales of woe, they almost always ended with us joined in a catharsis of fitful laughter, the two of us trading quips and throwing verbal barbs at MS and all its attendant indignities. He called me “Kazmo”, and it seems incredible that I’ll never again hear that voice on the other end of the line. I will miss him so. Was George perfect? Of course not, none of us are. At times that big heart of his proved a detriment, and overruled his head. His emotions could get the better of him and effect his decision-making, especially when it came to treatment choices. But who could blame him when faced with so frightening a foe, when so little is known about the progressive forms of MS, and when so many alternative treatments are promulgated and overhyped on the Internet? Fear plays a large role in the life of every MS patient, and George's MS was especially aggressive. Over many years I've learned the hard way that discretion is often the better part of valor, a notion that my friend George had a difficult time putting into practice. But he always meant well and acted with the best of intentions, with malice towards no one. Unlike me, a man who spent much of my lifetime wrestling with neurotic existential angst despite whatever successes I achieved, George was a man with relatively simple needs and desires, incredibly content with the basic pleasures of a happy family life thriving on the fruits of the prosperous business he worked hard to build. As he says in his farewell note, he was in his bliss mowing the lawn, shoveling the snow, or washing his truck, three activities which I would be only all too pleased to pay someone else to do, and if he was still here I’m sure we’d share a chuckle over that one. As is far too common, George’s long marriage tragically fell victim to his disease, and though he battled to remain productive, eventually he had to give up work as well. Losing his family and business, the very anchors of his life, tore his heart out, and inflicted more pain than the disease alone ever could. He loved his children dearly, and his mom Hilda, herself a delight and my treasured friend, was among the brightest lights of his life. She was with him when he died, and says that “he was so happy to finally give MS a kick in the ass that he had a beatific glow and a smile on his face at the last breath.” I know the “right to die” is a controversial issue, but let nobody ever say that George ended his life rashly, or on a whim. He was simply done suffering the indignities that the disease piles on, the relentless gnawing away of the man he once was. Suffice it to say that the exit he chose was not an easy one. George Bokos was a man who was true to himself, and he took control of his ultimate fate, one of the few things he still had any control over. Proud of his Greek heritage, George remained a Spartan to the end, but it is not that end for which he will be remembered. Though I write this through tears, I know that in time it is only the laughter we shared that will remain. George was one hell of a guy, a unique individual, a true and dear friend, and my comrade in arms. This world is a richer place for having had George in it; it owed him a better fate. Rest in peace, you crazy Greek, Kazmo will always love you.

I especially realised this after I had gotten rid of my last bastion of independence, my Car, I felt it was the right time to let it go, I guess I could've driven for a while longer, but there were other factors involved in my decision, availability of parking, distance to walk to my vehicle etc. The closest place was under a large eucalypt tree that are renowned for dropping branches, bark and a sticky gum like substance, they are often referred to as "Gum Trees" as a generalisation, though some might not be a "Gum Tree" as such, that's how I understand it anyway. This particular tree did in fact drop a branch on the side of my windscreen and cracked it, although not impeding vision in anyway, it wasn't in my "field of vision". It was time to face facts, it was the right time to the let the car go!Having MS, one eye was affected by Optic Neuritis and had become like looking though fog or a film of oil was on the surface of my eye, yep being a Mechanic in a previous life I have had a film of oil over both eyes before, so it's great description from my point of view....So I have given up my Bicycle (although, may try again one day, trike?), I previously had to let my old trusty Kawasaki GPz 900 go, that was a very sad day for me, both the Bicycle and Motorbike were not viable because of balance problems. I mainly rode Motorbikes, cars are tin death traps with drivers who are more and more distracted with gadgets these days, it isn't safe on the road and it's getting less so as far as I'm concerned :)So what now? Well the world of Mobility for the Disabled has come a long way since I was a lad, not that I needed disability aids pre MS.Enter the "Scoot" as I like to call them or Mobility Scooter, don't like business names for things that then become mainstream.I had organised a local disability aids business to bring down a second hand one for me to view and have a go on, I needed to also see how it would fit or not, in my small abode etc. The owner bought one down, it was in good condition for a second hand scoot but it wasn't suitable, simply it didn't have armrests, would be handy for a MSer I reckon, "no big deal" he said he had another one he could bring down to show me......three weeks later and a couple of phone calls to see what was happening and still no show, he was to busy. Still haven't heard from him, his loss, no sale. Didn't solve my problem though, I still needed wheels. My contact at the MS Society was also keeping and eye out for any bargains she might come across, through her contacts.The Scoot! Click to enlarge!I'll cut a long story short(er), there was a lady who unfortunately needed to move into a nursing home as her MS had progressed to the point where it was necessary (I find this heartbreaking, but I won't dwell, lest I start getting emotional), I went and looked at it and bought it, done deal. It's a bit rough around the edges, some cosmetic damage, but it was always serviced so hopefully I can get some use out of it while I wait to see if I qualify for a government funded Mobility Scooter, at the very least it will be 12 months away so I thought I would take a chance on this second hand one, while waiting. It was just the right price for an interim Mobility Scooter and for an Ex Mechanic who always liked to tinker with machinery and is often bored out of his brain. Let the fun and games begin, if nothing else it will keep me occupied.It will give me a chance to tinker with something, slowly, while I test it, clean it up and replace a few parts here and there, nothing major hopefully, it's a chance you take with anything second hand though so it's all good. So far I have tightened a few nuts and bolts and cleaned it up a bit, straightened the basket as it had been whacked at some stage I guess. People are expecting me to "pimp it" I have my doubts on that though, I just don't have the skill, patience or motivation, any more, might get some Ferrari decals (yes I know it aint Ferrari red), but that's about it, oh and maybe some led lighting for a brighter headlight, though modification requires a deft hand and a clear mind lol.The Scoot! Click to enlarge!I will need to replace one of the armrests though, for cosmetic and practicality reasons the rubber is starting to tear away from it's steal mount and the handlebar "loop" may need some thought most likely a bicycle hand grip like those foamy looking ones might do if I can make it fit the diameter of the bar, no rush it's still useable. Of course Australian prices are ridiculous for parts for these things, so I will see if overseas purchasing is a viable alternative, I'm guessing freight may kill that idea though. It cost me $300 AUD, I probably could have bargained but I think it was worth it, time will tell though lol.Happy and safe Trails, whatever your mode of transport, I will post more Scoot related blogs as I fix, learn and actually use the beast....beware tech tips coming! :)

A memory arrived in the mail the other day. It wasn’t unexpected, as I had ordered the item on eBay about a week earlier. My wife helped me open the package, and as its contents emerged my eyes fell upon an object that seemed like a long-lost piece of myself, a relic long consigned to the mists of remembrance suddenly made real once again. There in my one working hand was a nearly 32-year-old copy of “The Twilight Zone” magazine, dating back to August, 1981, its cover as instantly familiar to me as the face of a rediscovered old friend. I opened the magazine and flipped through the first few pages until I found the publication’s masthead, the long column of titles and names of the people who worked to publish each issue. Scanning the list, my heart jumped a bit as my eyes landed on a name that I knew would be there but which somehow managed to surprise me nonetheless. There it was, under the names of the Editor and Managing Editor, just as I remembered: “Editorial Assistant: Marc Stecker”. Me. Suddenly I was 17 years old again, as excited to see my name in print as I was the first time around over three decades past, back when all of life was still in front of me, and my current Twilight Zone like circumstances were beyond imagination. I worked at The Twilight Zone magazine during the spring semester of my senior year of high school. Because I attended what is considered to be New York City’s best public high school, Stuyvesant High, the school's bulletin board listing afterschool jobs attracted more than the usual busboy and supermarket positions most kids worked at in those days to earn their weekend money. I was lucky enough to be the first to respond to a new posting looking for a proofreader to work at a publishing company uptown. When I nervously arrived for my interview, I learned that the publication I was applying to work for was a magazine dedicated to The Twilight Zone, one of my all-time favorite TV shows. Back then, before the advent of cable television, when we had to make do with (gasp!) all of seven TV channels, The Twilight Zone was a syndicated staple of local non-network television broadcasts. I can’t speak for the rest of the country, but in New York City the show was televised seven days a week, usually with back-to-back half-hour episodes airing late at night in glorious black and white. Even before working on the magazine, I was already familiar with virtually every episode of The Twilight Zone, having viewed most of them numerous times. I was far from alone in this expertise; in those days before video games, my friends and I would sometimes while away the time recounting the diabolically clever plot lines of Twilight Zone episodes, even though we all knew most of the shows by heart. The original Twilight Zone series was produced in the late 50s and early 60s, the brainchild of creator Rod Serling, who introduced each episode dressed in a suit with skinny lapels and tie, a cigarette usually dangling from his fingers. The show featured off kilter tales with a very human touch that almost always ended with a mindbending twist, most episodes falling into the sci-fi/fantasy realm. In The Twilight Zone nothing was quite what it seemed, and you’d better be careful what you wished for, because wishes would often come true in unexpected and sometimes – but certainly not always – unpleasant ways. The episodes were deftly produced and directed, and were written by some of the top TV and film wordsmiths of the day. Several episodes starred actors who were already well known, or who soon would be, including Robert Redford, Jack Klugman, Burgess Meredith, and Agnes Moorehead, to name a few. Much to my surprise, after a brief interview with the magazine’s Managing Editor, I was hired on the spot. My daily tasks were devoted to assisting the very small staff of The Twilight Zone, which was primarily a two-person operation, with responsibilities split between an Editor and a Managing Editor, who were tucked away in a small office at a large publishing company. The company's primary product was a second-tier “adult” magazine (yes, the kind featuring naked ladies – a definite perk as far as this 17-year-old was concerned), with a large staff devoted to publishing it and some sister publications. The Twilight Zone magazine itself turned out to be not some cheesy fanzine, but an impressive, very literate publication, featuring not only information about The Twilight Zone and other science fiction and fantasy movies and TV shows, but also original fiction in the Twilight Zone tradition. As such, every month it featured half a dozen or so new short stories by known and unknown writers, including some very famous authors such as Stephen King and Joyce Carol Oates, stories whose typewritten pages I not only got to lay hands on but help copy edit, making sure the typeset “galleys” for publication were free from mistakes such as misspellings and misplaced punctuation. For a kid with literary ambitions, this was intoxicating stuff. As I sat in my wheelchair leafing through the yellowed pages of the old magazine, a steady stream of long dormant memories roused from hibernation. My job at the publishing house was my first foray into the everyday world of working adults, and I remember how surprised and amused I was at the controlled chaos around me. Though older and allegedly more mature, these folks seemed as full of foibles and quirks as my teenage friends and classmates. Did anybody ever really grow up? One of the big bosses at the publishing company was a man with a hair-trigger temper, who was plagued by physical tics that worsened the angrier he got. The editor of the magazine was a fellow named T.E.D Klein (who would later become a not very prolific but well-respected horror author), a man in his mid-30s with a sharp mind and dry wit. I vividly remember the big boss once flying into our office in a blind rage over some relatively minor transgression, screaming wildly as his tic ridden body Increasingly took on a mind of its own, his anger manifesting itself physically in the form of his uncontrollably pounding himself rhythmically in the center of his chest with his right forearm. I of course was horrified, but I could see T.E.D desperately trying to suppress his bemusement, his face weirdly puckered as he bit the inside of his lip in an attempt to not break down in uproarious laughter at the sight of the lunatic in front of him. So, this was life in the working world of adults. How strange. Although I only worked at the magazine part-time for six months or so before going off to college, those days were brimming with teenage drama and angst, and my time at the magazine was a heady source of pride. Not only did I get to work with the hand typed manuscripts of famous authors, but I also took part in helping choose photos and illustrations for the magazine (developing the deep crush on one of the freelance illustrators in the process), met a variety of interesting people (including Carol Serling, Rod’s widow), and generally felt very much a part of the team. Holding that old magazine, dating back to a time when I was about to embark on a defining new chapter of my own life story, I wistfully recalled that peculiar teenage mix of omnipotence and insecurity, the future rushing at me filled with prospects both exhilarating and terrifying. Life itself beckoned, and the preview reel that played in my mind featured visions of fame and fortune, romance and adventure, success and recognition, tempered liberally by fears of abject failure and disappointment. Despite occasional flashes of bravado, I was a bundle of neuroses back then, more Woody Allen than Mick Jagger, but still, my visions of a grand future seemed tantalizingly possible. The notion that my life would be upended by a creeping paralysis certainly never entered my mind, even though I was an accomplished hypochondriac. I feared cancer, brain tumors, even leprosy, but the prospect of paralysis never really occurred to me. Now, with my disease continuing to progress, all of those teenage notions of what was to be are painfully bittersweet, the decades old magazine that sat in my lap their physical encapsulation. Viewed from certain angles, my current circumstances could be fodder for one of the stories contained within its pages, and it has often occurred to me that in some ways I could very well take my place as a character in a Twilight Zone episode. I’m the wannabe writer who strayed from his path, his literary aspirations forever lingering as a painful reminder of dreams unfulfilled, until he contracted a dread disease and suddenly found his written ruminations reaching a worldwide audience through a medium that didn’t even exist when his dreams were first formed. I’m the lifelong neurotic and hypochondriac who spent countless hours and dollars on psychotherapy, whose inner demons were only put to rest through the realization of one of his greatest fears. I’m the disquieted seeker of wisdom always searching the arcane for glimmers of truth, only to grasp that which is truly important when forced to the sidelines of life, unable to apply the lessons learned to the existence he once led, the life interrupted. I’ve written this before, but in this context I think it bears repeating. If a fortune teller had told the 17-year-old me that at age 49 I would live with my beautiful wife in a skyscraper next to Lincoln Center, that I’d sleep and wake to my own schedule, that my writings and photos would be read, viewed, and valued by people all around the world, and that I’d spend my days free from the constraints of having to work for a living, I’d have been ecstatic, convinced that all of my dreams would be realized. Of course, that seer would have left out one little detail, one slight wrinkle, an asterisk attached to the story that would make all the difference between dream and nightmare. Yes, in The Twilight Zone you must be careful to read all of the fine print and consider every nuanced possibility. My life has seen me go from working at The Twilight Zone to living in my own private version of it, which in itself might make for an interesting episode. As Rod Serling might have said in an introduction to that episode, “Presented for your inspection, a man watching himself disappear, one side of his body paralyzed, and the other desperately trying to hold on. He finds himself oddly off-balance, his right leg immobile and his left firmly planted in The Twilight Zone…” So, has this Twilight Zone life delivered it’s final twist, or might there be one more to come, a happier one in my future unwritten? One can only hope, and hope is the precious legal tender of The Twilight Zone. Cue spooky music… Here’s a classic old episode of The Twilight Zone, enjoy…

After much consideration I have decided to take a break from blogging for now. I wish to turn my focus to take what I have already blogged about and finally get started writing that book. As my energy levels are stretched I feel I need to better spend it achieving a goal that I have wanted to start for a while now. Occasionally as I wade my way through the writing of my book I will post Amber Aireyhttps://plus.google.com/113561197150607724891noreply@blogger.com1

(Photo credit: Mike Licht, NotionsCapital.com)Given the importance of rigorous, verifiable research in the practice of modern medicine, it seems a natural assumption that the doctors who treat us base their actions and recommendations on solid, irrefutable evidence. Evidence-based medicine, is, after all, the mantra that we as patients hear over and over again, especially when it comes to our inquiries into the implementation of alternative therapies that fall outside of the medical mainstream. More often than not we are told that there is simply no evidence for the effectiveness of this or that alternative therapy, and that rather than waste our time and energy on unproven and possibly dangerous unconventional remedies, we should stick to the tried-and-true, which almost always come in the form of pharmaceutical products produced by one of the giant multinational pharmaceutical firms, known collectively as “Big Pharma”. The logic behind such thinking isn’t necessarily faulty. Untold millions of dollars are spent developing drugs and putting them through laborious clinical trials, the result of which is the evidence upon which “evidence-based medicine” thrives. Absent the data produced by this research model, the practice of medicine would be largely reduced to educated guesswork, based solely on the experiences and impressions of individual medical practitioners, which by definition would be limited in scope and might easily be skewed by subliminal prejudices and statistical aberrations physicians could encounter during the course of their careers. Relying instead on evidence amassed through years of rigid research encompassing thousands of patient hours makes deciding which medicine to prescribe or procedure to recommend an exercise in logic and intellectual reasoning, the cornerstones of all disciplines of modern science. This all makes perfect sense, and indeed this very reasoning has fueled the rapid advances seen in many fields of medicine over the last half-century. However, if the evidence which is the foundation of evidence-based medicine becomes unreliable, or downright misleading, the entire edifice that is modern medicine stands in danger of collapse. To an extent that is almost incomprehensible, this is the very environment in which patients and physicians now find themselves operating, as the research published in scholarly journals and presented at medical symposiums appears to be increasingly biased in favor of the drugs being researched, to the point that physicians are now basing their treatment decisions on woefully incomplete data sets and trial results that conveniently leave out the negative while emphasizing the positive. As is documented by British psychiatrist Dr. Ben Goldacre in his book “”Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients”, which was recently excerpted at Salon.com (click here), the trial evidence upon which doctors base their most important decisions is often misleading at best, and outright dishonest at worst. As more and more medical research is funded by the drug companies themselves, rather than by independent concerns such as foundations or government agencies, the results of that research appear to be becoming less and less reliable. Dr. Goldacre cites studies which show that research funded by pharmaceutical companies is far more likely to favor the drug being tested than studies funded by independent organizations. One such study, conducted in 2007, looked at every published study investigating the effectiveness of statin drugs, which are commonly prescribed to lower cholesterol. The studies either compared an individual drug to another kind of treatment, or to a competing statin drug. In all, 192 studies were surveyed, and researchers found that pharmaceutical company funded studies were 20 times more likely to give results favoring the test drug than similar trials funded by independent concerns. Other studies looking at different bodies of research found discrepancies that weren’t quite so dramatic, but invariably found that industry funded studies were far more favorable to the drug being researched. The reasons for this bias are many. Trial results can be manipulated by testing a drug against another drug given at a sub optimal dosage. Patient populations can be manipulated, so that only patients most likely to get better are used in the research. The researchers themselves, even those conducting studies that are properly designed, may be subconsciously biased by the knowledge that their paycheck is being funded by the pharmaceutical company whose drug is being tested. Whatever the reasons, the evidence appears to be irrefutable: the trial results upon which doctors base their treatment decisions are very often biased in favor of the treatment being tested. To make matters worse – much worse – drug companies routinely fail to report negative research outcomes, never allowing them to see the light of day. The companies conduct many studies on a single drug, and only publish those studies whose findings are positive for the drug in question. Dr. Goldacre writes about a situation in which he did the very best he could as a doctor, only to later find that he had been misled by the very act of doing his due diligence. In deciding on an antidepressant drug on which to put a patient for whom other drugs had proven ineffective, Dr. Goldacre read every published study he could find on a new drug he was considering, which all showed it to be better than placebo, and as good if not better than competing antidepressant drugs. Later, Dr. Goldacre learned that, though he had read all of the available studies, he’d only received a tiny glimpse into the true research record of the drug he was investigating, Reboxetine. Some time after Goldacre prescribed Reboxetine for his patient, researchers did a comprehensive survey of all the trials that had ever been conducted on the drug, including those that had not been submitted for publication in academic journals by the drug company, collecting their data through numerous requests to manufacturers and regulating agencies. They found that seven studies had compared Reboxetine to placebo. Of those seven studies, only one found the drug had a positive result, the other six found Reboxetine to be no better than a dummy sugar pill. Only the positive study was published for review by physicians. The six failed studies were never submitted for publication. Trials comparing the drug to competing drugs showed a similar pattern. Three trials, totaling 507 patients, found Reboxetine to be more effective than a rival drug. However, other trials, which used data derived from 1657 patients, found that Reboxetine treated patients fared worse than those on other drugs. These findings were again left unpublished, shielded from the view of the physicians. Tragically, this situation is typical of the industry. The fact that pharmaceutical companies can fund their own studies and decide to only publish positive data is unfathomable. Would we let, say, automobile manufacturers conduct their own safety tests, and without question accept their claims that the cars they make are the safest in the land? Of course not, yet this same practice has been allowed to flourish in an industry upon which the health of the world has come to rely. The situation is outrageous, but is so endemic that remedies are difficult to come by. The British Medical Journal, a highly respected academic journal better known these days as BMJ, has, as of January of this year, announced that it will only publish studies that allow access to patient data from all of the studies conducted on the drug in question. The editors of the BMJ lay out their case for this action in a hard-hitting editorial published last October (click here). If only other academic journals would follow suit. The pharmaceutical giant GlaxoSmithKline announced in October 2012 that it will open up all research data for investigation by physicians and scientists (click here). While this is an admirable step, it comes only after GlaxoSmithKline was forced to pay $3 billion to the Federal Drug Administration to settle three charges of fraud levied against it (click here), one of which included holding back data and making unsupported claims regarding its diabetes drug Avandia. Another of the charges in the GlaxoSmithKline settlement was that the pharmaceutical giant used inappropriate tactics to influence physicians to prescribe their drugs, tactics which included paying large speaking fees to doctors and providing them free access to high-priced entertainment. Couple the reality that pharmaceutical companies have been allowed to bury negative trial data with the fact that these companies routinely use their huge sales forces to court practicing physicians with offers of all-expenses-paid trips to “educational symposiums” in exotic locales, free gifts and lunches, and sponsored lectures, and we have what some cases amounts to a completely rigged system. As circumstances currently stand, physicians find themselves faced with a situation in which they can’t trust the research published in academic journals (often their only resource for such vital information), and many find themselves subject to conflicting influences offered by pharmaceutical companies, the success of whose products lies completely in the hands of these same physicians. The end result can only be that patients in general, who trust their very lives to doctors, can only wonder about the motivation and correctness of the treatment decisions made on their behalf. For MS patients, whose drugs can cost tens of thousands of dollars a year and some of which carry potentially deadly side effects, the gravity of these questions is only multiplied. It’s a situation that truly boggles the mind. The below video is a presentation given by Dr. Ben Goldacre on some of these very same issues. It's really a must watch…   Related articles

• 5 prescription drugs doctors had no idea could hurt their patients (ted.com)
• What is known - and not known - about your flu medication (macleans.ca)
• Profits over your dead body (arstechnica.com)

I've been on this Teriflunomide trial for about two years from memory, although trial visit days did vary, mostly a visit each month was what it settled down to. It was my big day out each month, I used to get cab charges for the each way trip there and back, with my laziness and fatigue issues easy travel was necessary for me as I would probably have never turned up lol.The trial has been enjoyable in that the nurses, specialists and various other staff were all professional, yet could have a laugh with you, all wonderful people. I had numerous scans a nuclear medicine test for kidney function it has been quite a ride, luckily not a traumatic one. I walked the length and breadth of the Austin Hospital with the occasional shuttle ride, some days all my energy was spent.Teriflunomide or Aubagio as it now seems to be called, has been approved in Australia for the treatment of Multiple Sclerosis though the next step is to have it listed on the "Pharmaceutical Benefits Scheme" or the "PBS" as it's known, this scheme effectively subsidises the price of drugs for all Australians. As an example, say the monthly cost of Betaferon was one thousand dollars, well we would get the prescription filled for say $25 in total, check those figures but it is a great scheme which makes medications and drugs affordable for everyone in society.Below is an image taken with my New Nexus 4 smart phone (shameless plug for great new mobile phone).There are some pics of the old packaging they used in the trial (previous post), the old packages were heaps better, in that they were in rows so you could quickly tell what day you were up to.The new packages are quite plain and as you can see in the image come in individual foil packs of five, ffs, could made them at least seven in a foil pack, would have been much easier to keep track of what day you were up to.Hey I have Multiple Sclerosis and have a fairly shitty memory, don't make it any harder for me lol. I might look at those granny pill boxes that are marked by day so much easier to keep track of where you're up to.I will still be supplied these drugs until they get approved on the PBS, I'm not sure what happens if they don't get on the PBS lol, should be interesting if that happens, so I will visit the drug trial nurses and see the neuro every three months oh and pick up a new supply of the drugs for the next 3 months.You can see a picture of the actual pill, it's a tiny thing, it's the top image, it's a bluish colour and has five sides, in the picture you will see that the pill is between standard lie heights on a writing pad, it's not a great size for clumsy MSers hands, although it is very easy to swallow because of said size.As far as side effects go, I have found Teriflunomide to be quite good with little or no noticeable effects, with MS obviously you are always having good and bad days so it's difficult to distinguish what is just life with MS or a side effect of a drug, having said that I think I did notice when I went from the placebo pill to the real deal at 14 mg, I just felt different.I also got some samples of Modafinil to see if they help with my fatigue and cognitive/memory issues that I enjoy lol, I'll post another blog about that though, don't want to bore you :)I'd like to especially thank Elise, she was my main contact for the trial, she would do the monthly tests, bloods, temp, urine, etc. I'd also like to thank Bassam my regular taxi driver, always helpful and fair!I have mentioned in my comment below about a pill box so I can keep track of my daily medication, here is an image I snapped of the pill box I purchased, the link to the shop is in the comment below, you will need to copy and paste it into your browser. Click to enlarge if you would like to have a more detailed view. A pill box for my daily medication has been invaluable, at the moment I am using it for one 5000iu Vitamin D capsule and one teriflunomide/aubagio pill each day, combine with google calendar reminders and you have a great system that remind's you to take your medication  :)

Intensive nutrition is the key…

I am a clinical professor of medicine at the University of Iowa Carver College of Medicine in Iowa City, Iowa, U.S.A., where I teach internal medicine residents in their primary care clinics. I also do clinical research and have published over 60 peer-reviewed scientific abstracts, posters, and papers.

In addition to being a doctor, I am also a patient with a chronic, progressive disease. I was diagnosed with relapsing remitting multiple sclerosis in 2000, around the time I began working at the university. By 2003 I had transitioned to secondary progressive multiple sclerosis. I underwent chemotherapy in an attempt to slow the disease and began using a tilt-recline wheelchair because of weakness in my back muscles. It was clear: eventually I would become bedridden by my disease. I wanted to forestall that fate as long as possible.

Because of my academic medical training, I knew that research in animal models of disease is often 20 or 30 years ahead of clinical practice. Hoping to find something to arrest my descent into becoming bedridden, I used PubMed.gov to search scientific articles about the latest multiple sclerosis research. Night after night, I relearned biochemistry, cellular physiology, and neuroimmunology to understand the articles. Unfortunately, most of the studies were testing drugs that were years away from FDA approval. Then it occurred to me to search for vitamins and supplements that helped any kind of progressive brain disorder. Slowly I created a list of nutrients important to brain health and began taking them as supplements. The steepness of my decline slowed, for which I was grateful, but I still was declining.

In the summer of 2007, I discovered Functional Medicine, an organization devoted to helping clinicians use the latest scientific discoveries to take better care of those with complex chronic diseases. As a result I developed a longer list of vitamins and supplements that were good for my brain. Then I had an important epiphany. What if I redesigned my diet so that I was getting those important brain nutrients not from supplements but from the foods I ate? I used what I had learned from the medical literature in Functional Medicine to create a new food plan, essentially built around ensuring that I was getting all those critical brain nutrients from whole foods, not just synthetic vitamins and supplements. At that time, I also learned about neuromuscular electrical stimulation and convinced my physical therapist to give me a test session. It hurt a lot, but I also felt euphoric when it was finished, likely because of the endorphins my body released in response to the electrical stimulation. In December 2007, I began the nutrient dense diet, stressing plenty of vegetables and berries, along with a program of progressive exercise, electrical stimulation, and daily meditation. The results stunned my physician, my family, and me: within a year, I was able to walk through the hospital without a cane and even complete an 18-mile bicycle tour.

Thomas Edison, over a hundred years ago, said, “The doctor of the future will give no medicine, but will interest his [or her] patients in the care of the human frame, in a proper diet, and in the cause and prevention of disease.” This became my new course, my passion, and my mission. I understood health and disease in an entirely new way. I became a new person, both physically and emotionally, both personally and professionally.

I began teaching residents and patients in our clinics how to care for themselves in a way I had only just discovered as optimal, using diet and health behaviors instead of drugs. Most patients were, in fact, very interested and willing to do what I suggested. The patients, as they adopted the diet and health behaviors, would steadily improve and need fewer and fewer drugs. The residents learned that diet and lifestyle are powerful treatments, often as effective as, or more effective than drugs.

I joined a multidisciplinary team that was taking care of veterans with traumatic brain injuries and again, I found that patients were often very eager to learn what things they could do to speed the healing of their brains. In patient after patient, I watched symptoms and the need for drugs decrease as diet and lifestyles improved.

Then I shifted my research focus. I wrote up the protocol I discuss in my book, Minding My Mitochondria- How I overcame secondary progressive multiple sclerosis and got out of my wheelchair, then sought and secured over $100,000 of funding to conduct a pilot clinical trial testing my interventions in others with secondary progressive multiple sclerosis. In our study, Nutrition, neuromuscular electrical stimulation (NMES) and secondary progressive multiple sclerosis (SPMS), we follow twenty individuals for thirty-six months as they use the same treatments I developed for myself.  The first nine have already completed the first twelve months of the intervention, with favorable preliminary data,  (one of our subjects is moving from cane and walker dependence to beginning to jog again), which was presented at the 2011 Neuroscience Conference in Washington, D.C. November 13 as a “Hot Topic.”

Furthermore, we then secured additional funding to add MRI scans to the second wave of participants. That study is underway and in December 2013 all 11 subjects will have completed 12 months and we will once again be writing up results for publication. 

I continue to study the impact of nutrition in our traumatic brain injury clinic. I teach medical students and resident physicians about food as medicine, and about therapeutic lifestyle interventions. I travel across the country, giving lectures to the medical community and to the public about the care of the human frame, the proper diet for the human being, and the causes of disease.

In short, I’ve become the physician of the future that Thomas Edison foretold, and I’ve made a commitment to spread this message of hope and healing around the world. My public lecture. “Minding Your Mitochondria,” given at a TEDx conference, was posted to YouTube on November 30, 2011.  This seventeen-minute video, tells my story, explaining what I did and the science behind eating a nutrient dense diet, has received over one million views. People around the globe are now learning they are alive because of chemistry and that chemistry cannot happen properly without a diet based on plentiful nutrient dense vegetables and berries plus some protein from animal sources such as fish. Health can be reclaimed.

I have a dream for us all, not just those with MS – that all people, young and old will understand how their choices create health, that children, parents, grand parents, policy makers, employers and employees – will know that growing stronger, faster, smarter, younger, and falling health care costs – are not about taking drugs or having surgery, but instead about eating vegetables, berries, fish, and seaweed – and eliminating the sugars and processed foods from our diets. Health care costs could actually plummet as our health soars if we choose to eat the way our DNA expects.  I have seen it in my patients and in our clinical trial.  We become what we eat. Our health can be improved and often fully restored.  Learn more at my website www.terrywahls.com. Register your email to receive newsletters and updates about my work.

In health,

Dr. Terry Wahls

 

 

Dr. Terry Wahls LLC

www.terrywahls.com

Minding My Mitochondria 2nd Edition

The Wahls Protocol (working title due out May 2014)

One day, I was working with an acupuncturist and she was burning incense on the palm of my hand. She told me to let her know when it gets too hot and she would remove it, but to try and keep it there for as long as I could. Well, I kept it there as long as I could letting the incense burn all the way through to the skin. She asked why I waited so long? She had said to keep it there for as long as I could and that's what I did! I kept it there much longer than a normal human being would have done. Why? Because I have a high tolerance for pain.There are different kinds of pains that I get from living with MS, and some are worse than others. They can range from aches to extreme itching to deep nerve pain. I know that I can count on experiencing at least a couple of them every day. I also know that when I'm feeling pain, that it will go away. For me, I think that knowing it will go away is a big part of tolerating pain.Don't get me wrong. I feel the pain. I grit my teeth's and sometimes writhe in pain. Occasionally I will let out a few expletives. So it is not that I do not feel "the nail going through my foot”. I do. I am just able to tolerate it. Again, knowing that it will go away is a big part of how I tolerate pain.Pain can be more than physical. There also emotional pains.  Pains that one experiences when they or someone close to them are diagnosed with an illness. Pains that are felt when a family member or friend or someone important to them passes away. I seem to have a high tolerance for these pains too. The questions are how and why.The answer for emotional pain is partially the same as it is for physical pain. I know that it will go away. “Time heals all wounds”. The cliché is always true, but there are other ways that I deal with the emotional pain.  What seems to work best for me is gratitude and perspective.I was very close with my mother. She was an extraordinarily active and vital woman who spent her life taking care of other people. She took care of her mother, her husband, and did everything she could to take care of our family too. But it did not stop with family. Whenever she saw or met someone that she thought she could help, she did. She also died at the age of 68.Dozens of people responded to her death by saying “she was so young”. My response was that 68 is not young. It is just not a particularly long life. In fact, we were lucky to have had her for as long as we did.She was not young. It is just that her life was not long enough. Her life wouldn't have been long enough even if she lived to be 120 years old. For me, the best way to accept her passing was to be grateful for all the years that I had with her.The best way to deal with pain, be it physical or emotional, is gratitude. Grateful in knowing that the physical pain will go away. Grateful in knowing person for as long as I did.Participate. Make a difference. Live a life that matters.

Maybe the best place to start this blog post is by welcoming Fibromyalgia back onto the scene. Actually it has always been there. Through misunderstanding I was lead to believe that I had been misdiagnosed. In fact as I have now found out I indeed had Fibromyalgia all those years ago and then along came Multiple Sclerosis. Ten years ago, when my GP at the time said to me I think you have Amber Aireyhttps://plus.google.com/113561197150607724891noreply@blogger.com0

Emerging into the light…

I witnessed a solar eclipse recently. I won’t claim that I saw it exactly, but I was definitely around while it was happening, and the men in my household were onto it right away. My 12-year-old wandered up to me at 7am and said vaguely “Mum, there’s something funny with the light,” which I ignored, thinking it was a request for home maintenance – how many mums does it take to change a light bulb? My husband, however, took his comment more seriously. “No, really, look at the light outside, it’s very strange.” And then I remembered the solar eclipse. In my defence, it was also our youngest daughter’s birthday that day, and being eight years old does tend to eclipse everything. We watched from the verandah as the light, which had indeed gone funny, stayed that way for a while and then went back to normal again. Living 100km north of Brisbane we didn’t get the full eclipse, just the edge of it really. Further north at the top end of Queensland the whole sky would have gone black, like it was night time. People flooded in from all over the world to see it, booking out hotels for up to three years in advance, and holding street parties in the morning to celebrate the event. Back in the Dark Ages though, a total eclipse would have been terrifying. WIthout understanding the science behind it this sudden, unexpected plunge into night time must have made ancient civilisations and cultures believe the world was about to end.

It’s interesting. Science has come so far in helping us understand the universe, our physical place in it, the natural laws within which it operates. But in some ways we are still living very much in the Dark Ages. And sometimes the very science that has helped to explain so much of our world seems to work against our spiritual and emotional maturity. The more we know the less we understand. And half the time we don’t even realise there’s a problem.

Healing is a good case in point. Many of us who have embarked on a journey of overcoming multiple sclerosis (however far we are along it – and who’s to know anyway?) are likely to have encountered hostile, aggressive, sceptical or in some way negative reactions to our assertion that it is possible to recover from MS. The textbooks, and therefore many of the neurologists who study them, say that ‘MS is an incurable, degenerative disease of the central nervous system’. My own attempts to prove them wrong have brought support from close friends and family, and from my GP, but scepticism from the MS specialist I choose to consult. For the first two annual visits, which I pay for, we just about managed to make our conversations fall into the category of debate and discussion rather than open argument. I’m continuing the ‘discussion’ in the hope that my recovery might help to change his mind one day.

That day might come sooner than I think. Because the science that ‘proves’ that MS is currently incurable and progressively disabling, is also being used to ‘prove’ that it is not. We have Professor Jelinek to thank for that. Firstly for providing the evidence-based recommendations that give us the blue print for healing MS, and secondly for following up those who are adopting it using well constructed research techniques. The five-year results, published last year in the journal Neurological Sciences, show a 20% improvement in physical and mental health for people with MS. A new study, Holism, looking at lifestyle factors in MS was also launched last year and will add to the statistical evidence.

So how long will it all take? How long before the typical reaction to a diagnosis of MS is  ‘I’d better change my diet’ or ‘ok, perhaps it’s time for a holiday’? Not that either of those two things is enough on its own, and perhaps that’s one of the problems. Yes, it is possible to overcome MS, but it is not easy.

So I’m imagining the future. A neurologist’s office in Australia in 2028, just 15 years from now. A young woman has just been diagnosed with MS. She has her whole life ahead of her; recently married, planning children, enjoying her career. And as they sit there facing each other, the young woman and the neurologist, the sky outside suddenly turns black. It is the next total solar eclipse down under, the one that has been accurately predicted to occur in July of that year. Outside there will be parties in the street, and people will have travelled from all over the world to witness the event. No longer living in the Dark Ages, this will be a day to celebrate.

And what of healing? Will it have emerged from the Dark Ages too? Will the young woman with MS be given some hope and the tools to bring about her own recovery?

Let’s hope so. Let’s hope that neurologists everywhere will have seen the light, even if it has gone a bit funny.

Her name is Debbie Christensen. I first met Debbie at a Tournament of Champions event, an event for the top fundraisers for the National MS Society.What a thrill it was for us to be there with this extraordinary group of people. Movers and shakers from all across the country who as individuals had each raised at least $10,000 for the MS Society. I had the chance to spend time with almost everybody there except for one person and that was Debbie. But she made a big impression on me.Fortunately we were invited back the next year and so was Debbie. I made it a point to spend some time with her and get to know her a little bit and what an extraordinary person she is.The first thing that you notice about Debbie is her smile. She is beaming with a huge smile that you could only assume is there 24 hours a day. She is happy, inspired, grateful, thrilled to be with people and to be included and recognized for who she is and what she does. She is an inspiration.She is also someone who has been very impacted by her MS. She has a caregiver with her 24 hours a day. She rides in a reclining wheelchair. She speaks very slowly and softly and yet has much to say. She stays active, involved, has a large family (over 200 cousins) and a lot of friends.  This past November I had the opportunity to spend more time with her and I'm happy to say that now I am one of her friends.Why does she inspire me? Because regardless of her circumstances she wakes up happy every day. Despite her seemingly limited abilities, she is there making a difference all the time. And I can only guess that what ever her MS has taken away from her physical abilities, it has added to her spirit.Debbie makes me want to do more. She makes me want to be more appreciative. She makes me want to have an impact on people and the world around me.But most of all she makes me smile.May you wake up happy every day of the coming year. May you find an opportunity for gratitude in everyone of your life experiences. May something as simple as your smile be an inspiration to those around you. May the new year be filled with miracles and blessings for you and your family. Happy new year everyone.You can read more about Debbie at the MS Society website.