Monday, March 23, 2015

Bits and Pieces: Short-Term Memory Edition (including MS drug news, restless genitals, natural remedies, Oscar Wilde, ancient viruses, and nauseating MS studies)

(For those readers who receive these posts via email, the following contains lots of multimedia eye and ear candy that can’t be accessed via email. I wouldn’t want you to miss out on all of the good stuff, so (click here) to view this post on the Wheelchair Kamikaze website)

Over past year or so, I felt like I was experiencing lapses of memory and that I just wasn't as mentally sharp as I used to be. Although my disease continues to decimate my body, it has pretty much left my mind alone, and I thankfully haven’t previously suffered from any of the cognitive difficulties that plague so many of my fellow MSers. Slowly, though, I started feeling kind of foggy, and began worrying that I was showing signs of CRAFT (Can't Remember A Freaking Thing). After fretting about this for a few months, I brought my concerns to my neuro, who ordered a battery of cognitive tests done to check my mental capacities. I subsequently did an intense four hours of cognitive testing, and received the results last week. Happily, everything checked out okay, and when compared to cognitive testing that I had done back in 2005 the results were practically identical. So, I guess those short-term memory problems were all in my head (pun intended). What a relief!

Over past year or so, I felt like I was experiencing lapses of memory and that I just wasn't as mentally sharp as I used to be. Although my disease continues to decimate my body, it has pretty much left my mind alone, and I thankfully haven’t previously suffered from any of the cognitive difficulties that plague so many of my fellow MSers. Slowly, though, I started feeling kind of foggy, and began worrying that I was showing signs of CRAFT (Can't Remember A Freaking Thing). After fretting about this for a few months, I brought my concerns to my neuro, who ordered a battery of cognitive tests done to check my mental capacities. I subsequently did an intense four hours of cognitive testing, and received the results last week. Happily, everything checked out okay, and when compared to cognitive testing that I had done back in 2005 the results were practically identical. So, I guess those short-term memory problems were all in my head (pun intended). What a relief!

Right then, now that we’ve established that I’m just a sharp as ever, I offer my latest anthology of MS news and info that has caught my attention over the last few months. It’s been quite a while since I’ve done a Bits and Pieces post, so there’s lots and lots of stuff to go over. So much so that I’m leaving out all of the recent research that’s been released regarding HSCT, the extremely promising stem cell therapy that “reboots” the immune system. I’ll do a separate blog post on HSCT in the next few weeks, as it looks like HSCT just might radically change the MS treatment landscape. In the meantime, what follows may be kind of lengthy, but I’ll try to keep it as entertaining as possible and provide you with lots of multimedia distractions. So, let’s have at it…

♦ I first wrote about the iConquerMS program a few months ago (click here), and I’d once again like to urge all MS patients to sign up and take part in actively helping to kick MS's ass (click here). IConquerMS is a patient driven research project designed to use data collected from thousands of patients to compile information about those patients’ disease history, treatment experiences, and family background so that researchers can glean new insights into the wild world of multiple sclerosis.

I like to think of the project like this: if you imagine MS as a huge jigsaw puzzle made up of millions of pieces, and each patient a single piece of that puzzle, it's easy to see that looking at only a few pieces of the puzzle at any one time would give you very little chance of figuring out what picture the puzzle makes when all the pieces are fit together. While it might be impossible to collect every single piece of this immense puzzle, grabbing a significant chunk of them would give you a much better shot at discerning the picture as a whole. Likewise, iConquerMS aims to collect data from at least 20,000 patients to give researchers a chance to glimpse as big a piece of the MS puzzle as possible. Additionally, patients who sign up at the iConquerMS website can take part in member forums where they can submit research ideas and give their opinions on a variety of MS related topics. The project is being facilitated by The Accelerated Cure Project (click here), one of my favorite MS nonprofit research organizations, so you can be confident that all data will be anonymized and the identity of any individual patient will be kept confidential, and that none of the info will be sold or otherwise put to nefarious use. So, please, please, please, pretty please, sign now up to take part in iConquerMS  (click here).


♦ Now, a peek into the always warm and fuzzy world of MS drugs (insert dripping sarcasm here). Although I started out quite critical of the MS Disease Modifying Drugs (DMDs), through many years of interacting with hundreds of MS patients and reading study after study I now understand that these drugs (especially the newer generation drugs, like Tysabri) can at the very least dramatically increase the quality of life of many of the patients who take them. They are far from perfect, and none of the current MS drugs do a lick to cure the damned disease, but I've learned that you have to go where the science leads you. No patient should be satisfied with the MS status quo, which more and more focuses on treatment rather than cure, and all of the newer generation multiple sclerosis drugs carry with them worrisome potential side effects and a whole set of unknowns regarding the effects of long-term treatment, but at this point I don't think there can be any arguing their beneficial impact on many of patients who choose to take them. I personally feel that the effectiveness of these immunosuppressive drugs has led researchers to take their eye off of what should be the real target, finding the ultimate cause of the disease, but that's a subject for a different day. Here then is a mixed bag of some of the newest research info on MS drugs, both good and bad.

It seems that ever since the first MS drugs were introduced back in the mid-1990s there has been an ongoing debate as to whether or not these drugs actually alter the course of the disease, or if they merely mask symptoms while underlying disease progression chugs along unabated. Through the years a multitude of studies have been published supporting both sides of the argument, some saying that the drugs do slow disease progression while others offer completely contradictory evidence. The latest study to look at this issue comes out of Sweden, using a large database of Swedish MS patients who were diagnosed between 2001 in 2005. This study finds that early treatment with disease modifying drugs does indeed slow disease progression (click here). And though the Swedes seem to be among some of the world’s most trustworthy people and – perhaps more importantly – they make some damned good meatballs, I’m sure this won’t be the last word on the subject. It does appear, though, that there is a growing mountain of evidence that supports the notion that early, aggressive treatment may be a vital component in keeping the MS beast at bay, at least for folks with RRMS.

As many patients are keenly aware, Tysabri is among the most effective MS drugs available, but the treatment comes with some troubling potential side effects. Chief among these is PML, a horrendous and often fatal brain infection caused by the JC virus. Although the JC virus is quite common in humans, infecting between 70%-90% of the general population (click here), the immune system typically keeps the virus in check. However, the same immunosuppressive properties that makes Tysabri so effective in combating MS can also allow the JC virus to become active and lead to PML. Since Tysabri became widely available to the public in 2006, neurologists have attempted to reduce the risk of PML by carefully monitoring patients for the presence of JC virus antibodies in their blood, and these efforts have lessened the dangers associated with Tysabri treatment. For patients currently on Tysabri or considering starting the drug, the folks at the Barts and London Medical School in England have come up with a web-based “PML calculator” (click here), which should help patients assess their chances of getting the dreaded disease by simply answering a few questions. I did some quick hypothetical calculations using this web-based gadget, and found that patients who aren't infected with the JC virus have a 1 in 10,000 chance of developing PML. In other words, for these patients, the risk of PML is very, very small, about .01%. On the other end of the spectrum, though, patients who are JC virus positive, who have previously been on immunosuppressive treatments, and who have been taking Tysabri for between two and four years have a 1 in 89 chance of developing PML. Not so good. In addition to the PML calculator, the page also includes information on the effectiveness of Tysabri, and I’d encourage anybody interested to take a look.

Now, some good news about Tysabri. A recently released study shows that in addition to the drug's well documented ability to reduce the most obvious signs and symptoms of MS such as relapses and lesions appearing on MRIs, Tysabri also has a positive impact on some less apparent but very debilitating aspects of MS, such as depression and fatigue (click here). Those of us who suffer from MS fatigue know all too well how crushing a symptom this can be, and in fact for some patients MS fatigue is their most debilitating symptom. Many patients don't realize it, but in addition to the depressing nature of the destructiveness of MS, the disease can cause physical changes in the brain that can trigger depression. So, the fact that Tysabri can improve fatigue and depression in MS patients is no small positive.

Some troubling news about the oral MS drug Gilenya: it was disclosed earlier this month that a patient who had been on the drug for four years developed PML (click here). This is the second case of PML reported in patients taking Gilenya. Like Tysabri, Gilenya is a powerful immunosuppressant, and though its mechanism differs from that of Tysabri, both drugs are effective in treating RRMS in large part by keeping T cells out of the central nervous system. While the incidence of PML in Gilenya patients appears to be quite rare – there are currently about 110,000 patients taking Gilenya – this latest case serves to illustrate the potential dangers of long-term immunosuppression. As previously noted, these newer, more powerful MS drugs have dramatically increased the quality of life for many relapsing remitting patients, however, the potential dangers associated with their long-term use remained largely unknown. Keep in mind, most drug trials last only 2-3 years, and until newer, more effective, and perhaps more benign treatments become available, patients are expected to be on these drugs indefinitely.

In more bad news regarding Gilenya, the much anticipated results of a trial testing the oral MS drug on patients with Primary Progressive Multiple Sclerosis (PPMS) were finally released, and much to the chagrin of those of us who suffer from this especially insidious form of creeping paralysis, the news wasn’t good (click here). Gilenya proved to be no better than placebo in treating primary progressive disease. This was a very disappointing outcome as there are currently no approved therapies for treating PPMS, which afflicts approximately 10% of the MS population. PPMS differs from RRMS in that PPMS patients never experience any relapses or remissions, instead only a steady increase in their ever more disabling symptoms. There are quite a few other differences between these disease types, including the fact that PPMS attacks men and women in equal numbers, while the female to male ratio in RRMS is somewhere along the lines of 3 to 1. Take it from me, PPMS is a grizzly bear, and this was the first drug trial involving PPMS patients in quite a long time. Researchers were initially very optimistic about this trial’s chances at success, but their expectations proved to be misguided, dammit. There are more trials directed at progressive disease now underway, and researchers are increasingly focusing their attentions on the enormous problem of progressive MS, so hopefully there will be better days ahead.

Those patients taking Tecfidera or thinking of starting Tecfidera treatment will be interested in a recently released study that looked at the levels of immunosuppression brought about by the drug (click here). Tecfidera is one of the newest “blockbuster” MS drugs to hit the market, an oral drug that is supposed to have a less daunting side effect profile than some of the other powerful MS disease modifying drugs now available. Although not initially marketed as such, it turns out that Tecfidera is a potent immunosuppressant, and patients on it are well advised to get regular blood tests to make sure their white blood cell counts don’t drop into dangerous territory. This new study sought to understand exactly which immune cells are most affected by the drug, and found that a type of immune cell known by the catchy name CD8(+) T cells are more heavily suppressed by Tecfidera than other lymphocytes (a type of white blood cell). This is significant because CD8(+) cells are heavily involved in fending off viruses, and if they are overly suppressed a patient could be made vulnerable to opportunistic viral infections, such as the infamous JC virus, which can cause PML. No reason to panic if you are on Tecfidera, but definitely reason to insist that your neurologist is diligent in checking your blood counts.

♦ Okay, I’m not going to giggle, I am not going to giggle… Researchers have recently identified a new symptom of neurologic disease related to Restless Leg Syndrome (RLS), a condition dubbed Restless Genital Syndrome or RGS (click here). Also known as Persistent Genital Arousal Syndrome, the condition was recently described in a 65-year-old female patient suffering from Parkinson’s disease. I know that many MSers, myself included, complain of restless leg syndrome. RLS can drive you absolutely batty, making your limbs feel like they have been overwhelmed by the creepy crawlies, urgently insisting that they need to move for no apparent reason whatsoever. I call my version of the syndrome “Restless Everything Syndrome”, as it effects not only my legs but my arms and hands as well. It never even occurred to me that The Mean Wrigglies – my other name for the condition – might cast it's maddening spell on someone's naughty bits. And now I find out about Restless Genital Syndrome. Gadzooks!

Thinking back, it occurs to me that RGS may have been my first ever neurologic symptom, manifesting itself quite suddenly when I was around the age of 12. Yes, I can vividly remember my nether regions becoming plagued by an ever growing restlessness at the start of my adolescence; by the time I was in high school my trouser worm was positively hyperactive, a coiled spring just looking for any chance to go “boing”! Damned impatient precocious baloney pony! And then, as a young adult, my Mr. Winky developed a veritable wiener wanderlust, an almost whimsical need for tallywhacker exploration and ding-a-ling derring-do! Such was my tragic lot, to be tormented in the very bloom of youth by as pernicious a condition as Restless Genital Syndrome! RGS, epidemic amongst teenagers worldwide!

I’m terribly sorry for the above display of rank immaturity, as I can only imagine that RGS is an extremely distressing condition for any individual having to deal with it. My sincerest apologies. My only excuse is that I'm as mature as two-day-old scotch. To make up for my boorish behavior, here’s a gift of music, a rockin’ old stomp blues number about a lady who most definitely did not suffer from RGS, by the little-known but in his day absolutely irrepressible Mr. Wynonie Harris…


♦ Researchers have recently determined that Constance Wilde, the wife of legendary 19th century Irish writer, wit, and bon vivant Oscar Wilde, died of multiple sclerosis (click here). It seems that Constance Wilde suffered from a mysterious malady that none of the doctors of her time could diagnose. She first became ill in 1889, suffering from lameness in her leg that required her to use a walking stick. Over the next several years her disease progressed, and she suffered from bouts of severe pain as well as decreasing mobility. In 1896 she wrote, “I am tired of doctors and no doctors finding out what to do with me”. Sound familiar? In 1898 she underwent surgery, performed by a doctor who was convinced her bladder problems were caused by a tumor, and she died several days later. So, it seems Constance Wilde received medical care in 1896 that is just about on par with that received by a few of the MS patients I know in 2015. Sadly, I'm only being mildly sarcastic here, and I’m sure Oscar would have something quite droll to say about the current state of MS affairs… In honor of Constance Wilde, here are some of her famously sardonic husband's amusing quips:

– "The world is a stage, but the play is badly cast."

– "I like men who have a future and women who have a past."

– "Work is the curse of the drinking classes."

– "Anyone who lives within their means suffers from a lack of imagination.”

♦ A Wheelchair Kamikaze reader recently reached out to me with what I think is a terrific idea. An MS sufferer herself, she wants to start a website on which artists with MS can sell their work, with a percentage of the proceeds going to MS nonprofits. Seems like a terrific concept as I’d love to find a no hassle place to sell my photos, and I know quite a few other MSers with an artistic bent who I’m sure would take advantage of such an outlet if it existed. I you're interested, please take a few minutes to fill out an online survey about the planned website (click here), which will help the website creator as she moves forward with her idea.

♦ Regular readers of this blog probably know that my favorite theory regarding the root cause of MS has to do with ancient viruses called HERVs (Human Endogenous Retroviruses) that have, over the course of millions of years of evolution, become incorporated into human DNA. At points in the distant past these viruses were infectious and perhaps deadly, but through the eons they've been rendered inert. Scientists thought that these bits of ancient viruses were permanently dormant, but over the last decade evidence has emerged suggesting that they can be activated by the presence of other viruses, bacteria, and/or toxins (the primary suspect is Epstein-Barr virus), and once activated can cause our own cells to produce proteins that identify the cells as potential attackers. This would set the immune system into motion, and thus we might have the mechanics behind “autoimmunity”. This is the only rational explanation for autoimmunity I’ve yet come across, and my gut tells me that investigations into these ancient viruses will upend modern medicine. Some researchers now believe that HERVs may be the driving force not only autoimmune diseases, but also many cancers and even some psychiatric illnesses. Let’s not forget, despite the fact that all current MS drugs target the immune system, the aberrant immune response in MS is more a symptom than a cause, a sign that there is some deeper as yet unidentified problem behind all the chaos.

A new study provides yet one more hint that HERVs play a significant role in multiple sclerosis. Scientists decided to see if antibodies to a specific HERV that has been associated with MS were more prevalent in MSers than in healthy people (click here). Sure enough, two of the antibodies that target this ancient virus were found to be elevated in MS patients when compared to healthy controls, indicating that the virus was active in those suffering from MS. Furthermore, antibody levels decreased after treatment with interferon beta (the stuff in Rebif, Avonex, Betaseron, and Plegridy). Might it be that these drugs suppress MS disease activity because of their antiviral properties rather than the supposed immunomodulatory properties that the MS establishment has been touting for the last 20 years? Things that make you go “hmmmmm…”

♦ Two new studies indicate that drinking lots of coffee can protect people from getting multiple sclerosis (click here). A study out of Sweden – yes, those Swedes have been up to a lot of MS research lately – found that people drinking six or more cups of coffee a day were one and a half times less likely to develop MS than people drinking less coffee. Disappointingly, no word on whether the consumption of Swedish meatballs has any impact on the disease. A US study looked at similar data and found that folks who drank four or more cups of coffee were also one and a half times less likely to develop multiple sclerosis. No word on whether coffee consumption impacts people who already have MS. I spoke to my naturopathic doctor about these studies and although many people might jump to the conclusion that caffeine is probably the reason behind coffee's anti-MS properties, she reminded me that Java contains a wide range of biologically active components, so caffeine alone may not be the answer. I’ve always been a tea drinker, so it's no wonder I got this damned disease. I must say, though, that if I drank 6 cups of coffee a day I'd be so wired that not even the quickest researcher would be able to catch and hold me long enough to conduct any kind of medical study on me. That’s a hell of a lot of coffee. Also, if I tried to drink 6 cups of coffee a day with my current MS related bladder issues, I would simply never stop peeing. Literally. Never. Never ever, not for a single second stop peeing. My wheelchair would have to be converted into a commode.

In tribute to the researchers who conducted these studies, who, considering the current pay to play model of medical research were probably employed by Starbuck's, I present you with the following delightful old tune, “Java Jive”, performed by the classic swing era vocal group The Ink Spots…


♦ In more news about potential natural remedies, researchers in Chicago have discovered that the oral ingestion of cinnamon can suppress multiple sclerosis, at least in mice (click here). Cinnamon appeared to fight off the mouse version of MS in animals that didn’t yet have the disease, and helped suppress symptoms in mice that did. Now, I generally don’t report on MS research done on mice because the most common mouse model of MS, called EAE, bears very little resemblance to the human version of the disease. So many substances have been found to cure mice with EAE that I usually don’t even bother reading research reports once I realize the experiment being reported on was done on mice with EAE. If even a tiny fraction of the substances that cure EAE were effective in treating multiple sclerosis, MS would have been wiped out decades ago. Despite these caveats, cinnamon is pretty yummy, so for those who might want to try gulping down some cinnamon on the off chance it might help their disease I'll go ahead and provide the following instructional video, featuring YouTube sensation Glozell Green:


♦ Here are three bits of MS research news that share one thing in common: the yuck factor. Though they’re all different, upon reading these studies my first response was to wrinkle my nose and say “blechh!”

First up, some news out of Australia about a very promising new drug targeted at secondary progressive multiple sclerosis (SPMS) that uses the bacteria found in human acne as one of its ingredients (click here). Go figure, zit juice might someday help vanquish progressive MS. Yuck! Quite honestly, I don’t think there is anything so revolting that I wouldn’t try it if I thought it might help me fight my disease. What’s that? Crawling up the ass of Chris Christie might slow down my disease progression? Get me to New Jersey!

Our second piece of cringe worthy MS news is quite fascinating, really. Researchers in Australia (Aussies again, what’s up with that? They must be in cahoots with the Swedes) noticed that women who are infected with the bacteria that causes stomach ulcers have a reduced risk of developing MS (click here). Specifically, the study found that 14% of women with MS were infected with the bacteria H. pylori, but the same bacteria showed up in 22% of healthy subjects, a wide enough discrepancy to suggest that infection with the bacteria somehow protects against MS. Researchers propose that H. pylori itself may not inhibit the development of multiple sclerosis, but that infection early in life with certain bacteria and even parasites may prime the immune system to fight infectious agents and steer it away from attacking the body’s own cells. This line of thought is often referred to as the “hygiene hypothesis”, which states that the ultra-hygienic nature of life in the developed world may actually be detrimental to long-term health. After all, our immune systems evolved in the presence of all kinds of infections and parasites that are no longer part of life in hygiene obsessed Western cultures. The absence of such nasties may leave the immune system with too much time on its hands, eventually leading it to mount an attack on the body’s own cells. As they say, idle hands to the devil’s work…

In a related piece of nausea inducing MS news that may argue against the hygiene hypothesis, a study demonstrated that drinking parasitic worm eggs appears to be of no use in battling RRMS (click here). In this trial, patients drank a solution containing worm eggs every two weeks for 12 weeks. Though the treatment was well-tolerated (I take this to mean that nobody hurled while drinking their worm eggs), it also proved to be ineffective. Previous studies of this ilk have found that similar treatments have helped patients with Crohn’s disease, so maybe the jury is still out on worm egg cocktails as a treatment for autoimmune disease, so the hygiene hypothesis lives on. Heck, I’ll take parasites over MS any day of the week. In fact, I’ll have my wormtini dry and with olives, thank you… Here’s mud in your eye! Hey, there’s an idea for a MS clinical trial…

♦ As has become my tradition, I’ll end this edition of Bits and Pieces with some red-hot music by an artist tearing it up in the “neo-soul/R&B” genre. Though Nick Waterhouse hardly looks the part of the soul shaking bluester, his music has turned this funky monkey into a Nick Waterhouse junkie. In this video Nick and his band are joined by Daryl Hall and some additional sensational musicians. The saxophone on this track slays me. If this doesn’t shake your booty it's time to shout "code blue" and break out the defibrillators…



RIP George Bokos, two years gone but never forgotten.

Monday, March 9, 2015

National MS Society Decision Makers Take Big Bucks from Big Pharma

As I detailed in two recent Wheelchair Kamikaze essays, the American National Multiple Sclerosis Society has repeatedly rejected grant proposals to help fund the only FDA approved human MS stem cell trial currently being conducted in the US, which is now underway at the Tisch Multiple Sclerosis Research Center of New York (click here and here). These two previous posts resulted in a flood of email and phone calls to the powers that be at the NMSS (thank you, dear readers), who responded by saying that the Society makes decisions regarding which research projects to fund based on the recommendations of committees populated by a wide range of internationally renowned experts. This got me thinking, just who are these experts and what elements might go into their decision-making process? Inspired by a comment left by WK reader Jennifer Ziegler, I decided to do some digging.

One of the provisions of the ever controversial Affordable Care Act (otherwise known as Obamacare) is the creation of a website that allows the general public to search a database of pharmaceutical company payments to physicians, called the Open Payments Data website (click here). For those who may be blissfully unaware – and as outrageous as it may seem to those who are aware – it’s common practice in this country for pharmaceutical companies to line the pockets of the physicians who prescribe their products by way of cash payments given out largely as consulting and speaking fees. Mind you, for the most part these payments are perfectly legal, but it does make one wonder just how objective even the most well-meaning physician can be when making decisions that involve choosing between the products of the drug manufacturers whose money they accept versus those of their benefactor's competitors. This ethical quagmire is often described quite politely as a potential “conflict of interest”.

The NMSS helpfully provides lists of the “Scientific Peer Reviewers” who advise the Society on decisions regarding which research projects are worthy of support (click here). Plugging the names of these peer reviewers into the Open Payments Data website reveals what I think is some enlightening information. First, though, please let me illustrate just how much money the pharmaceutical companies that sell MS drugs pay to physicians in efforts to promote their wares. On a drug by drug basis, the following list details the amount of money that made its way from pharmaceutical company coffers into the pockets of MS doctors in the five months spanning August-December 2013. Naturally, the list excludes drugs that have been approved since 2013. I gleaned this info from the Pro Publica website (click here), which provides detailed numbers derived from the database compiled by Open Payments Data:

· Aubagio $3.4M

· Avonex $775.8K

· Betaseron $510.8K

· Copaxone $4M

· Gilenya $682.2K

· Rebif $856.6K

· Tecfidera $2.2M

· Tysabri $1.4M

· TOTAL $13,825,400

Your eyes are not deceiving you, the pharmaceutical companies paid MS doctors who prescribe their drugs $13,825,400 during the last five months of 2013 alone. Again, this is all publicly disclosed data, and such payments are perfectly legal. Call me crazy, but I can think of only one non-expletive that can adequately describe that number: Yikes!

Now, moving on to the NMSS and its peer reviewers; the National Multiple Sclerosis Society utilizes nine standing committees to review research grant proposals for MS research. As previously noted these committees are comprised not only of physicians, but also PhD researchers as well as lay experts in various related fields. It should be noted that the Open Payments Data website contains only information on pharmaceutical payments to licensed physicians, so while the PhD researchers who sit on these committees might occasionally benefit from pharmaceutical company largesse, such payments wouldn’t show up in the database. It should also be emphasized that the physicians on the following list are not evil people; far from it, they are simply professionals legally taking part in an insanely dysfunctional medical system. I'm sure that those who actively treat patients care deeply about those patients. I’ve even had the occasion to meet one or two of these doctors, who I would without hesitation describe as quite brilliant. Still, the pernicious influence of pharmaceutical company money can’t be discounted, even if it works only on a subconscious level.

The two committees I chose to investigate are those that include licensed MDs and which seemed most likely to play a role in making decisions on human stem cell trials. Here then, a list of MD peer reviewers who sit on NMSS advisory committees who accepted pharmaceutical payments from August through December 2013, and the amount of money they received. These totals exclude any funds paid for medical research efforts:

MDs On The NMSS "Research Programs Advisory Committee" Who Received Pharma Money

· Dr. Bruce Cohen, Northwestern University Medical School – $224.87

· Dr. Anne Cross, Washington University – $4311.28

· Dr. Stephen Hauser, UCSF – $4184.86

· Dr. Mary Hughes, Neuroscience Associates – $13.62

· Dr. Aaron Miller, Mount Sinai School of Medicine – $26,855.11

· Dr. Michael Racke, Ohio State University Medical Center – $5733.86

MDs on the NMSS "Clinical and Translational Research Committee" Who Received Pharma Money

· Dr. Laura Balcer, University of Pennsylvania – $2281.36

· Dr. Bruce Cree, UCSF – $74,965.41

· Dr. Philip Dejager, Brigham and Woman's Hospital – $15,294.97

· Dr. Edward Fox, MS Clinic of Central Texas – $76,760.44

· Dr. Omar Khan, Wayne State University – $112,964.52

· Dr. Andrew Pachner, UMDNH-New Jersey Medical School – $29,995.44

Yes, in the mere five months covered by the records of the Open Payments database one of the NMSS research committee physicians received over $112,000 from pharmaceutical companies, two received over $74,000 each, and two more received over $25,000 each. When considering these numbers, ask yourself whether you would trust the recommendations of a film critic who was found to be receiving generous payments from some of the movie studios which produced the films he was reviewing? Would you allow that critic to decide which scripts should be greenlighted and made into movies if you knew that some of those scripts might in some way damage the profit-making abilities of the studios from which he was receiving payments? Me neither.

I’ve often railed that the NMSS should immediately stop accepting funding in any form from the pharmaceutical companies, if only to avoid even the slightest hint that those funds might influence the Society’s actions. I’m confident the goodwill generated by the Society taking such a public stand would far outweigh any financial hit they might incur, and in fact would be priceless. After looking into the pharmaceutical monies received by physicians who serve with the NMSS in research decision-making capacities, I find myself aghast at my discoveries. Even if the doctors involved are nothing but well-intentioned, as I’m sure they are, I would think it impossible that the tens or even hundreds of thousands of dollars they receive from pharmaceutical companies would have no influence on their decision-making process, perhaps even only on a subconscious level. If these payments didn’t result in tangible benefits for the pharmaceutical companies making them, they wouldn’t be made. Large corporations are not in the habit of handing out millions of dollars a year for no good reason. This may be good business, but it makes for bad medicine.

I urge the NMSS to immediately institute a policy forbidding physicians who sit on any of their decision-making committees from accepting pharmaceutical monies for any reason. The confluence of the interests of for-profit corporations with the clinical practice of medicine and medical research cannot be anything but corrosive. These practices will only stop when we as patients and those who love us rise up and demand action. It’s horrendous enough to be stricken with a dreadfully heinous disease intent on robbing those it attacks of their very humanity; to find oneself simultaneously caught in the misguided, tangled mess that is the modern medical industrial complex can crush the soul. It’s time for those of us stricken with MS to make our voices heard, to make a stand and demand that the largest MS advocacy organization in the world take the initially painful but ultimately crucial steps towards living up to their mandate; to not preserve the status quo but instead eradicate once and for all the fetid scourge of multiple sclerosis, a mission I fear impossible when done in concert with corporate entities whose own legal mandate is to turn illness into industry.

The contact number for the National Multiple Sclerosis Society is 800-344-4867. A list of the NMSS senior leadership team, including email links, can be found by (clicking here). I would ask that all opinions expressed or inquiries made be done so in as civil a manner as possible, making pains to avoid personal attacks. The goal is not to antagonize, but to foment change that would benefit both the National Multiple Sclerosis Society and the patients it is meant to serve.

I leave you with the following brilliant piece of video from the HBO TV program Last Week Tonight, featuring John Oliver. This incisive and hilarious segment illustrates better than I ever could just how insane is the current state of Big Pharma/physician relationships. Please, please watch, learn, and enjoy…


Tuesday, February 24, 2015

Interview With A Kamikaze

I was recently contacted and asked for an interview by fellow MSer Meagan Freeman, who writes the excellent blog “Multiple Sclerosis, Motherhood, and Other Traumatic Experiences: The Life of a Nurse Practitioner With MS”. After checking out Meagan’s blog and making sure she wasn’t part of the vast government conspiracy intent on siphoning off my Cosmic MS Mojo for use in covert attempts to transform reptilian aliens into characters on the “Real Housewives” reality TV shows (you didn’t think those people were actual human beings, did you), I readily agreed.

Meagan asked me a series of eight questions, on topics ranging from what I may have learned from dealing with my disease (that La Paz is Bolivia’s third most populous city – oh, wait, on second thought I think I learned that from the CNN show “Anthony Bourdain’s Parts Unknown”) to my opinion of stem cells (I think they're kind of cute, especially the ones with long whiskers).

I’ve taken the liberty of posting three of Meagan’s questions and my corresponding answers below. To read the full interview, you’ll have to hoof it on over to Meagan’s blog, by (clicking here). While you’re there, be sure to check out some of Meagan’s other essays. She’s a passionate, insightful writer who shares her, thoughts, feelings, and experiences dealing with the beast quite eloquently.

Thanks for your indulgence…


What motivates you on your “bad days,” and gives you the strength to carry on?

Sometimes nothing motivates me on bad days, and I accept that it's okay to listen to my body and do as close to nothing as possible if that's the way I'm feeling. I think it's very important for MS patients to realize this; discretion is the better part of valor, and some days it's okay to just allow yourself to be a person with a horrible disease who just flat-out doesn't feel good. Even on those days, though, it's important to do nothing to the best of your ability, if that makes any sense. If you're going to stay in bed and watch SpongeBob SquarePants all day, that's fine, but try to enjoy the heck out of watching SpongeBob SquarePants all day while you do it, rather than just succumbing to the fear and misery that can become part of life with multiple sclerosis, using SpongeBob as a backdrop while you wallow in the muck. It's okay to wallow every now and then, also, but don't get stuck in the muck, whatever you do.

On most days, though, what motivates me is the knowledge that this day is the only "this day" that I'm ever going to have, this minute is the only "this minute" that I'm ever going to have, and this second is the only "this second" that I'm ever going to experience. Time is everybody's most precious possession, and it gets more precious with each passing moment. Unfortunately, you don't get any rebates or refunds for time you spend miserable; there's no cosmic scorekeeper keeping track of the brownie points you might think you're earning while wrapped in self-righteous unhappiness. I think back on all the time I wasted when I was healthy, tied up in knots about things that ultimately turned out to be completely insignificant– and, boy, I went out of my way to find things to be miserable about – and realize just what a fool I was.

Not saying that you can somehow just sit around grinning like a blithering idiot and smile away your problems, but we do shape our own realities through the filter of our minds, and we can control our emotions, not the other way around. Pop culture often leads us to believe that it's our emotions that rule the day. In reality, nothing could be further from the truth, as your emotions are born of you, not you of them…

How has writing and blogging changed your daily life? Do you find writing therapeutic?

Writing the blog is definitely therapeutic, much more so than any of the MS therapies I've tried. I honestly never thought that more than a few dozen people, mostly friends and family, would ever read Wheelchair Kamikaze, and its success continues to astound me. Going back to one of your previous questions, researching items for the blog and answering email from readers is one of those things that motivates me on bad days. So, yeah, the blog has definitely impacted my daily life, in so many positive ways.

When I left work to go on disability, I wondered how I would fill my days. In all honesty, occupying my time turned out to not be that much of a problem; despite being relatively successful I never really liked working, and the freedom of no longer having to work was kind of exhilarating. I know this isn't the case for many people, but who I was and what I did for a living very rarely meshed as I built my career. The success of Wheelchair Kamikaze really makes me wish I had devoted more time to writing when I was younger, which may have led me to a more fulfilling career. Better late than never, though, as they say. I just wish that I had something a lot more pleasant to blog about, and that there weren't so many people who can identify with my subject matter.

Any advice you would have for those who are transitioning to using a wheelchair?

My best advice would be to just go for it. It took me way, way too long to finally get over myself and admit that I needed a wheelchair. By the time I did so, I was practically housebound, and the disease had definitely gotten the upper hand as far as my having any kind of independent social life was concerned. Believe me, there's a big difference between Armchair Kamikaze and Wheelchair Kamikaze. In the months immediately preceding my getting the mechanical monster, my ability to leave the apartment on my own had dwindled to almost nil. The day I got my wheelchair the world was once again open for business, so to speak, and suddenly I was able to fill my days with adventurous urban excursions around New York City.

I vividly remember the day my chair was delivered. After the wheelchair tech left, I sat across from the chair giving it the stink eye, having a hard time accepting the fact that this thing was now basically a part of my broken body. Then the 12-year-old boy that lies just below the surface took note of the fact that the thing has wheels, motors, and the joystick. I dragged myself over to the chair and sat down, and was soon whizzing around my living room, recklessly smashing into and upending coffee tables, sofas, and chairs.

That evening when my wife came home she insisted we go out for a "walk", a notion that had me horrified. Me, in public, in a wheelchair?!? Good heavens, no! With a bit of cajoling, my wife soon won out, and we were out on the streets of Manhattan, me with my backside firmly planted in a rolling electrical beast. I was certain that the attention of every pedestrian in the city would be riveted upon me, but instead nobody seemed to notice. Truth of the matter is, most people are so self-absorbed that they barely give any attention to anything outside of their own heads, and they could care less that some guy in a wheelchair is sharing the sidewalk. Gotta say, the moment I realized this was one of the few times I've ever been grateful that narcissism plays such a large role in human psychology.



To read the rest of the interview, please (click here) to go to Meagan’s blog. Thanks.

Tuesday, February 10, 2015

National MS Society FAIL: UPDATE – The NMSS Responds

First, I’d like to thank all who helped contribute to the online dialogue (some might even call it a brouhaha) spurred by my last post on this blog (click here), which detailed the American National Multiple Sclerosis Society’s repeated refusals to fund the only current ongoing FDA approved stem cell trial being done on MS patients in the nation, at The Tisch Multiple Sclerosis Research Center of New York. Your response has been a personal inspiration to me, and your comments and sharing of the article on social media have definitely been noticed by the powers that be.

Several readers have forwarded me statements they received from the NMSS in regards to phone calls or emails they sent to the Society in response to that Wheelchair Kamikaze post. The body of each example of the Society’s feedback includes identical text, apparently written by the Society’s communications department. Nothing wrong with that, per se, as any large organization needs to fashion a coordinated response to any issue of concern, but I do feel it necessary to make some points about the reply sent out by the NMSS. Here’s the heart of the text sent by the Society to those who inquired about the organization’s repeated lack of funding for the Tisch Center’s ongoing stem cell research efforts:

“Regarding stem cell research, the Society is currently funding 15 research projects exploring various types of stem cells, including cells derived from bone marrow, fat and skin.  We have supported 70 stem cell studies over the past 10 years.  We have also convened international meetings on the potential of stem cells to drive new, effective MS treatments.

The Society’s research funding decisions are determined with advice from internationally renowned scientific experts who review the more than 500 research proposals received each year.  These volunteers bring a broad range of knowledge in different MS specialties, including stem cell research and clinical trials expertise. They help us determine each proposal’s scientific merit and relevance to MS, assess the originality of the proposed project, and evaluate the experience and scientific track record of the applicants. 

The decision to not fund the Tisch MS Center stem cell clinical trial was based on the advice of a review committee comprised of experts with experience in stem cell research and clinical trials as well as perspective from individuals living with MS.  The lead investigator, Dr. Saud Sadiq, received written feedback regarding the scientific evaluation of his proposal and was invited to reapply for funding to address the specific concerns. We are pleased to receive proposals from Dr. Sadiq and to work with him. In fact, the Society has collaborated with his research team on an innovative pilot project to understand one of the biological pathways in MS. 

There is exciting progress being made through innovative research related to the potential of many types of stem cells for both slowing MS disease activity and for repairing damage to the nervous system. With the urgent need for more effective treatment for MS, especially progressive forms of the disease, we believe that the potential of all types of cell therapies must be explored.  

Additional information about Society funded stem cell studies and stem cells research underway internationally can be found on our website http://www.nationalmssociety.org/Research/Research-We-Fund/Restoring-What-s-Been-Lost/Repairing-Damaged-Tissues/Stem-Cells-in-MS

Although my own professional expertise on any of the matters outlined above is infinitesimally small compared to that of the internationally renowned scientific experts who decide which research efforts the NMSS will fund, I’ll take the liberty of commenting from my position of expertise as a patient being forced to slowly watch himself disappear courtesy a horrendous brain and body eating disease. I've also been a patient at the MS clinic that works hand-in-hand with the Tisch Center since 2004, and being the pain in the ass that I am I’ve become quite familiar to and with many of the doctors and researchers involved.

I’ll start my comments on the statement put out by the NMSS with a short, general critique of the Society : Too Much Pharma!

Now, I know that this criticism may sound simplistic, hyperbolic, and even a bit trite at this point, but the influence of Big Pharma on all aspects of medical research has been terribly corrosive, and not because the pharmaceutical companies are staffed by evil ogres intent on hiding cures from a nettlesome population of sick people. No, I honestly believe that the vast majority of pharmaceutical company employees are good people doing their jobs to the best of their abilities, and therein lies the crux of the problem.

The job of pharmaceutical company executives, who helm what are almost all publicly traded enterprises, is to make as much money as possible to keep their companies’ stock prices on an ever increasing upward trajectory. This creates a confounding conflict of interest; treating chronic diseases in perpetuity with hyper expensive drugs has become a very successful business model; curing them, on the other hand, kills that business model. Combine this dynamic with the fact that we’ve handed almost all of our mid and late stage medical research over to the pharmaceutical companies, and you have a research model that is dysfunctional to its core, and one which leads many to suspect that the pharmaceutical companies would use a variety of tactics to delay or suppress any potential treatments – like, say, stem cells – that might damage their core business model.

The NMSS has consistently stated that less than 5% of their donations come from Pharma. I’m not sure if this figure includes all of the advertising dollars the pharmaceutical companies spend on NMSS publications and events, but even if it does, it’s too much. I am always astounded by the massive amount of advertising contained in the NMSS’s primary publication, the slick quarterly magazine Momentum, which serves as the face of the organization that serves as the face of multiple sclerosis for most of the general population of America. It’s hardly a stretch to say that every other page contains a Madison Avenue type advertisement for one MS drug or another, the total effect of which makes it easy to perceive the NMSS as a mere extension of the pharmaceutical companies.

If indeed Pharma monies make up less than 5% of the Society’s yearly take, my best advice to them would be to divest themselves completely of these monies. The shortfall would in large part, I’m sure, be quickly made up by donations from people who have long held back from giving because of their perception of the NMSS being locked in Big Pharma’s embrace. The Society could continue educating patients about MS disease modifying drugs, and do so without even the slightest hint of being under the sway of the companies who manufacture them.

In contrast, the International Multiple Sclerosis Management Practice (IMSMP), the MS clinic associated with The Tisch Center, doesn’t even allow pharmaceutical company representatives through the front door. The doctors who work there are not allowed to take any pharmaceutical company largess, and the clinic is one of the few medical facilities I’ve ever visited that doesn’t have the name of one pharmaceutical product or another emblazoned on every pen, sticky note, and wall decoration in the place. You’ll find none of these things at the IMSMP, precisely because the physician who runs the facility, Dr. Saud Sadiq, is fiercely independent and refuses to let the influence of Big Pharma, no matter how subtle, cloud the judgments of the staff who works there.

It is true, as the statement put out by the NMSS asserts, that the society has funded research into stem cell therapy in the past, and is currently funding 15 stem cell trials in the US. The problem is, as best I can tell, all of those studies are early-stage studies being conducted in test tubes or on animals, and even if successful the benefits of these trials will not reach MS patients for at least a decade or more.

The study being conducted by the Tisch Center is a human trial, using living, breathing MS patients to test a technologically advanced stem cell therapy which, if successful, could revolutionize the treatment of multiple sclerosis in a relatively few number of years, not decades. The Tisch Center spent over 10 years doing test tube and animal research before getting their FDA approval, so that work has already been successfully completed. Again, this trial is the only FDA approved stem cell study currently being conducted on MS patients. The only other such trial that I know of was completed by the Cleveland Clinic last year.

The NMSS writes that their decision whether to fund a project depends on “each proposal’s scientific merit and relevance to MS”, assessment “of the originality of the proposed project”, and evaluation “of the experience and scientific track record of the applicants”. I spoke to one of my friends who works at the NMSS's headquarters in Denver, but due to confidentiality agreements between the Society and grant applicants they could not divulge whatever issues the NMSS may have had with the research being done by the Tisch Center. I can say that the research proved safe enough and showed enough potential coming out of the laboratory to be only the second MS stem cell trial to win FDA approval, and the Tisch center applied for NMSS grants on three separate occasions, each application addressing the issues the Society had with the last. I'm not sure what "individuals living with MS" the NMSS consulted with, but from where I sit (since I can barely stand) the research is most certainly relevant to MS.

Furthermore, the Tisch trial is using proprietary methods to transform raw stem cells into a type of stem cell specific to the central nervous system, a technique far more sophisticated than any previously used in human stem cell trials, and far more refined than the stem cell treatments being offered, at substantial cost, to patients by most offshore clinics. I’d say that accomplishment should tick the “originality” box on the list of NMSS requirements.

As for the “experience and scientific track record of the applicants”, if I were to list the research published by scientists at The Tisch Center in only the last five years, this post might just break the Internet. Okay, maybe that’s an exaggeration, but you can check out just some of the research being done by the Center on their website (click here).

The Society’s response to inquiries about their repeated rejections of the Tisch Center’s research proposals further states that “The lead investigator, Dr. Saud Sadiq, received written feedback regarding the scientific evaluation of his proposal and was invited to reapply for funding to address the specific concerns.” This is quite true. What is also quite true is that Dr. Sadiq submitted not one, not two, but three proposals to the NMSS, attempting each time to address their concerns, to no avail.

The first proposal was submitted before the trial received FDA approval, and one of the primary stated reasons for the NMSS’s rejection of that proposal was the fact that the trial wasn’t FDA approved. After the trial received FDA approval, another proposal was made, which was again rejected. Undaunted, and in need of funding to continue this vital research, the Tisch Center submitted a third proposal, which the researchers involved believed addressed the concerns expressed by the Society's most recent rejection. The third proposal was again rejected.

I’m not privy to the precise concerns expressed by the Society that were used to back up their rejection of the third and final grant proposal submitted by the Tisch Center. However, I do know that the trial did win an extremely rare FDA approval, is using state-of-the-art technology and techniques, is testing methodology that if successful will expand the boundaries of the science, and is being conducted by world-class researchers at a world-class facility in the heart of the biggest city in the nation.

Any safety concerns that the NMSS's experts may have had should have been alleviated by the FDA approval, and unless those experts included soothsayers and seers I'm not entirely sure how they could determine the odds of success for a trial the likes of which has never before been attempted. I may be admittedly biased, but I find it hard to imagine that the Society’s concerns were so dire that three rounds of proposals couldn’t result in a solution. Especially since, even as you read this, hundreds if not thousands of MS patients are flocking to medical tourism sites offering unproven stem cell treatments at facilities of widely varying quality at a cost of many tens of thousands of dollars out-of-pocket.

The NMSS further states that it is funding one pilot project currently underway at the Tisch Center, and this is true. The trial in question was funded back in 2011 to the tune of $44,000, which may seem like a substantial amount of money to the average Joe, but in the world of medical research is fairly negligible (keep in mind that the NMSS receives approximately $100 million worth of donations every year). I spoke with the head of fundraising at the Tisch Center, who told me that the NMSS may have funded another Tisch Center study back in 2005, but she’d have to dig through her files to confirm that. I told her not to bother.

So, there you have it, the National Multiple Sclerosis Society’s response to inquiries as to why they refused to fund a trial that, in my humble opinion, has at least as much potential to change the lives of MS patients as any currently ongoing study, and my reaction to that response. Perhaps I’m partial since I am a patient of Dr. Sadiq’s, but my passion on the subject comes more from the desperation I feel as a human being whose body is being consumed by a relentlessly vicious disease, and not from my allegiance to any medical professional or facility. I promise.

I would urge those who feel similar passion to have their voices heard. The contact number for the National Multiple Sclerosis Society is 800-344-4867. A list of the NMSS senior leadership team, including email links, can be found by (clicking here).

I would also ask that all opinions expressed or inquiries made be done so in as civil a manner as possible, as to a person the NMSS staffers I know personally are truly good people who are fully dedicated to the cause. It’s just the institution they work for that may be misguided…

Friday, February 6, 2015

National MS Society FAIL! Repeatedly Refuses to Fund Only Ongoing FDA Approved MS Stem Cell Trial…

The National Multiple Sclerosis Society (NMSS), by far the largest MS nonprofit organization in the US, has three times rejected grant applications from the Tisch Multiple Sclerosis Research Center of New York, which were submitted in an effort to procure funding for what is now the only FDA approved regenerative stem cell trial being conducted on MS patients in the nation. The trial in question uses a very sophisticated approach to this experimental therapy, arrived at after over a decade of development in the laboratory, in an attempt to repair nervous system tissues damaged by multiple sclerosis (click here). The failure of the NMSS to help fund this trial is, at the very least, extremely disappointing, and should be of great concern to all those who support the organization.

The goal of nervous system repair and regeneration has long been a Holy Grail of MS research, and investigations into using stem cells to achieve this end hold terrific potential. MS patients around the world are eager to see stem cell research accelerated, as dissatisfaction with current treatment paradigms runs rampant in many segments of the MS population. Patients with the progressive subtypes of the disease are especially desperate for innovative new treatment approaches, as no existing therapy has been shown to put a dent in these especially insidious forms of multiple sclerosis.

The level of desperation felt by many members of the MS community has fueled a rapidly growing medical tourism industry largely comprised of unregulated offshore clinics offering unproven stem cell therapies at prices that can easily amount to many tens of thousands of dollars. The lure of copious bundles of cash to be made by offering such therapies has attracted at least one despicable con artist into the fray, as I wrote about in my last Wheelchair Kamikaze entry (click here). I fear there may be many more lurking in the weeds.

Given the current "Wild West" atmosphere surrounding the commercial MS stem cell industry, it is vitally important that precious research dollars be expeditiously directed to legitimate, scientifically valid stem cell studies being conducted by the best of the best, scientists with proven track records of academic and scientific achievement in the fields of MS and neurodegenerative diseases. Just last week, the Canadian MS society announced that it was providing $4.2 million in funding for a 40 patient trial to be conducted by some of Canada’s most respected MS neurologists (click here). While the American NMSS provides funds for preliminary research inquiries into the use of stem cells to treat MS, most of them using animal or test tube models of the disease, the organization has inexplicably chosen to reject grant proposals submitted by the Tisch Center, despite the fact that the Center’s trial received a hard won FDA approval – the lack of which was cited by the NMSS as reason to reject the first grant proposal submitted by the Tisch Center – and is using a more sophisticated approach than any other regenerative MS stem cell trial to date.

Most previous attempts at using stem cells to repair MS damage have involved intravenously infusing a basic type of stem cell (called mesenchymal stem cells) back into the patient from which they were taken. The Tisch Center is taking this approach several steps further, using proprietary methods to transform raw mesenchymal stem cells into a type of stem cell known as neural progenitors, which are specific to the central nervous system. The cells are then injected directly into the spinal fluid of trial subjects, where, in theory, they should be more effective at effecting repairs and combating the disease. The first phase of this trial is now underway, and many of the trial's human subjects (including Richard Cohen, noted journalist and author – click here) have started receiving their stem cell injections.

I am a patient at the International Multiple Sclerosis Management Practice (click here), which is the clinic closely associated with the Tisch Research Center. I am therefore very well acquainted with the principal investigators running in this trial. I’ve been aware of their arduous efforts in the area of stem cell research almost since the day I became a patient at the clinic, in the summer of 2004, under the care of Dr. Saud Sadiq. The Tisch Multiple Sclerosis Research Center (click here) – which is funded entirely by a private, nonprofit foundation that is unaffiliated with any hospital, academic institution, or government agency – worked extremely hard at getting the FDA approval before embarking on their trial, submitting applications to the regulatory agency several times before finally getting the coveted approval in August 2013.

Unfortunately, receiving FDA approval and procuring the funding needed to proceed with the trial were two separate battles. In today’s tough economic environment research monies are difficult to come by. After receiving their FDA approval, the Tisch Center submitted two subsequent grant proposals for vitally needed research funds to the National Multiple Sclerosis Society, both of which were rejected without any viable explanation. Subsequently, the Tisch Center mounted extraordinary efforts to raise the necessary capital, culminating in a crowd funding effort through the Internet site Indiegogo (click here). The final $300,000 needed to start the trial was raised through this online effort, in large part from donations by patients themselves and those who love them.

With the first phase of the trial now underway, the researchers and administrators at the Tisch Center have their hopeful eyes fixed on phase 2, which is expected to expand the treatment to a greater number of trial subjects using lessons learned during the first phase of the study. This projected expansion will naturally require additional state-of-the-art equipment to be purchased and world-class researchers to be hired, and private fundraising efforts are already underway to procure the financial resources needed to facilitate these necessities, which are expected to require more than $1 million of investment.

I’m fully aware that the NMSS does some extraodinarily good work on behalf of the MS community. The organization not only funds research but also provides education and support to tens of thousands of MS patients in the United States, and has innovated many programs designed to help the MS community in a wide variety of ways. I consider several employees of the National Multiple Sclerosis Society friends, and the NMSS workers with whom I am acquainted are wonderful, bighearted, talented people fully dedicated to the cause.

I also know, though, that the NMSS – which has become THE face of multiple sclerosis to the American general public – has grown into a multi million dollar a year many tentacled behemoth, too entwined with and reliant on mainstream medical dogma, the pharmaceutical companies, and, perhaps on institutionally subconscious level, an increasingly unacceptable MS status quo; and that it can play unnecessarily rough when working with other, smaller MS nonprofits, which are often left to scramble for the fundraising scraps the NMSS leaves behind. That said, it is the knowledge of the power and potential for good represented by the NMSS that makes its repeated rejections of the Tisch Center’s vital research so discouraging and disheartening. One can only question the decision-making processes involved within the Society that would lead to the withholding of much needed funds from the Tisch Center, a transparent, fully certified nonprofit organization staffed by world-class researchers and some of the most caring physicians I’ve come to know, who are conducting cutting-edge stem cell research that has the potential to completely transform the MS treatment landscape.

As a patient with progressive MS who is watching himself slowly circle the drain, I’m outraged at the NMSS’s actions (or lack thereof) in regards to the Tisch Center’s ongoing stem cell trial, and as a human being who knows firsthand the dedication of some of the national organization’s staff I find myself confused and deeply saddened by the Society’s behavior in this regard. If there are politics at work, well, get over it, and if there are some other tangible objections the NMSS has to the Tisch Center’s research, by all means, state them loud and clear so they can be properly addressed. Time, and brain, is wasting…

For more info on the Tisch Multiple Sclerosis Research Center of New York (click here).

The contact number for the National Multiple Sclerosis Society is 800-344-4867. A list of the NMSS senior leadership team, including email links, can be found by (clicking here).

Friday, January 23, 2015

A Stem Cell Scam Unravels…

As many MS patients are aware, stem cells represent one of the great hopes for vanquishing multiple sclerosis by way of their tantalizing potential for repairing damaged brain and spinal cord tissues, regulating aberrant immune responses, and ultimately restoring patients to good health. Research into the use of stem cells to treat a wide variety of diseases is increasing seemingly by the day, and scientists are beginning to unlock the tremendous promise of these emerging therapies. The therapeutic use of stem cells may dramatically transform the medical landscape in the coming years, and this prospect provides much-needed hope to patients desperately searching for answers.

Sadly, where there are significant populations of desperate people, there are almost always human sharks ready, willing, and able to take advantage of them. Thus, it seems, we have the story of Regenetek, a Canadian company that arranged for patients to travel to India for an experimental stem cell treatment under the guise of a certified medical clinical trial. Over the last several weeks, the Canadian press has revealed that the man behind Regenetek, Mr. Doug Broeska, allegedly misrepresented his credentials, the qualifications and abilities of his company to conduct a valid medical clinical study, and cajoled, bullied, and berated patients who dared question his authority or the veracity of his claims (click here). It must be said that while some of the patients who underwent the Regenetek’s stem cell therapy in India received no benefit, others have reported good results, and that’s where this story gets tricky. Though Regenetek and Doug Broeska may turn out to be complete shams, the stem cell therapy the company was hawking may have value, at least according to patients who claim to have seen benefit from it (click here).

I first became aware of Regenetek when Mr. Broeska invited me via email to join Regenetek’s private Facebook group, where patients discussed various aspects of the company’s stem cell treatment and their experiences with it. At that time, Broeska was known as Dr. Doug Broeska, or “Dr. Doug”, claiming that he was a “PhD medical researcher”. That rather generic designation set off a few red flags in my mind, especially after a quick Google search revealed little other than the fact that Mr. Broeska had been involved in some sort of electronic medical records company before taking an apparently rather sudden interest in stem cells.

Further red flags sprung up when, after spending a little time on his Facebook page, I saw that Broeska was posting articles he had written on various stem cell related subjects that contained errors and misinformation. These articles were also posted on Regenetek’s website and blog. One article in particular raised my cackles, a piece about HSCT – a type of stem cell therapy in which a patient’s immune system is ablated using chemotherapy drugs and then rebooted through the use of bone marrow derived stem cells, which clinical trials are proving to be quite effective in properly selected patients – that was so ill-conceived that I felt compelled to call out the myriad inaccuracies in the piece. After a bit of back-and-forth, Broeska removed the article, but his seeming intentional misrepresentations of fact set off alarm bells of doubt in me about his credibility.

As I’ve mentioned in the past, I’m not a huge fan of Facebook, and after the above incident I didn’t spend much time visiting the Regenetek page. I was left with questions about the clinical trial the company was supposedly conducting, since it seemed that the only follow-up being done after patients returned from India were e-mailed anecdotal patient self-reports of how they were doing post treatment (no MRIs, neurologic testing, or other objective measures required), as well as doubts about many of the statements and claims made by “Dr. Doug”, but I’d seen how anybody raising such concerns on the site were met with hostility and frankly wanted no part of it. I remained in email contact with one of the members of the group, who occasionally asked for my opinion on stem cell related topics and told me about several disgruntled patients, but other than that I didn’t give Regenetek or Mr. Broeska much thought at all.

A few weeks ago I was alerted to the fact that the Regenetek Facebook site and related webpages had been taken down, along with Doug Broeska’s business profiles on the LinkedIn website. Soon after, an article appeared in the Winnipeg Free Press detailing Mr. Broeska’s alleged web of deceit (click here). Among the article’s findings were that “Dr. Doug’s” claims of earning a PhD at the University of Manitoba could not be confirmed (the University had no record of his graduating), and that another of his claimed degrees came from an institution called Brightland University, which apparently doesn’t actually exist, and is only part of the University Degree Program, an online degree mill that operates dozens of sham institutions. Furthermore, Broeska had claimed that he was a member of the International Cellular Medicine Society (click here), an international stem cell research oversight organization, but the executive director of the ICMS could find no evidence of Broeska’s membership. It had also been claimed that Regenetek’s clinical trial was being run under the direction of several Institutional Review Boards (IRB’s), which are governing bodies that ensure the validity of medical research efforts. No record of any legitimate IRB approvals could be found, and one of the organizations cited by Broeska as overseeing the Regenetek clinical trial was found to be headed up by one of his business partners.

Additionally, Broeska often boasted that Regenetek was a not-for-profit corporation, and that the company actually helped subsidize the cost of patients' treatments, for which the patients themselves paid up to $45,000 US. While Regenetek is indeed registered with Canada as a not-for-profit entity, most of the patients sent for stem cell treatment in India paid their fees to another Broeska owned company, CliniCard, which is a for-profit corporation (click here). Allegations have also been made that Regenetek paid patients that had gone through their stem cell protocol to recruit other patients, and to post testimonials and videos on Facebook and YouTube.

Perhaps worse than all of Broeska’s alleged falsehoods and financial sleight-of-hand were his practices involving many of the patients with whom he dealt (click here and here). According to reports, patients were threatened with being kicked out of the Regenetek clinical trial if they questioned any of the claims or methodologies used by Broeska after they returned from India. Broeska repeatedly stated that virtually all patients undergoing the treatment protocol in India saw “curative effects”, and that many had “returned to complete health without symptoms” (click here). Patients who reported little or no benefit from the treatment were accused of working for competitors, or otherwise having ulterior motives, and were booted out of the Regenetek study. Upon returning home, most patients received little if any follow-up, despite their supposedly enrollment in an ongoing clinical trial. Broeska was known to spend hours emailing and even Skypeing with prospective clients, befriending them in an effort to convince them of the validity of his claims and of his expertise in stem cell research, and ultimately to sign them up for treatment in India, to the tune of tens of thousands of dollars.

Regenetek partnered with an Indian firm called Genesis, whose Chief Operating Officer is an IT professional named Surjo Banerjee, that oversaw the medical procedures performed at a hospital in Pune, India. As previously stated, patients were charged up to $45,000 US for treatment (not including travel expenses), which consisted of CCSVI angioplasty combined with an infusion of stem cells derived from the patient’s bone marrow, in addition to intravenous and intrathecal (spinal) infusions of these same autologous mesenchymal stem cells. While in India, patients also underwent roughly 2 hours of physical therapy each day, purportedly to help the stem cells circulate to where they were needed. Perhaps not coincidentally, studies have shown that periods of intense physical therapy alone can markedly improved the functionality of many MS patienes, although the benefits fade after physical therapy is stopped (click here). Many of the claims and methodology used in what Regenetek dubbed the CTP (Combination Treatment Protocol) have been challenged by doctors familiar with stem cell technology (click here).

Due to the fact that so little actual follow-up was done on the approximately 70 patients who traveled to India for treatment, it’s impossible to quantify the actual effects of the treatment; suffice it to say that of the relatively few patients who have been heard from there are some who say they have seen sometimes dramatic improvement, and others who claim the CTP treatment to be a total failure. It’s impossible to objectively judge the veracity of subjective anecdotal patient reports, as any number of factors could contribute to the self-reported success or failure of any experimental medical procedure.

I will say by all accounts it does appear that Regenetek patients did receive some sort of stem cell therapy from licensed doctors while in India, effective or not; the scam that occurred lies mostly in the manner by which patients were recruited and then handled after they returned home, and in the financial shenanigans allegedly undertaken by Mr. Broeska and his colleagues. Unfortunately, because of the lack of any rigorous follow-up whatsoever, the actual effects of the treatment on the 70 or so patients who underwent the stem cell therapy will never be known, at least in any scientifically valid fashion. This is a real shame, for who knows what valuable lessons might have been learned if these patients had been properly assessed post treatment by qualified medical professionals?

As of this writing, the Indian company Genesis, which worked hand-in-hand with Regenetek until news of this scandal broke, is planning to continue offering stem cell treatments in India (at a cost of $16,050 US, as compared to the $45,000 charged by Regenetek), and even has plans to open a clinic in Trinidad despite the questions surrounding its offerings (click here). Patients who paid deposits to Regenetek but have not yet gone to India are demanding refunds, but thus far have had very little success getting any response. Posts have appeared on Facebook pages on which this matter has been discussed stating that representatives from Genesis or Regenetek will not be answering any inquiries posed on those sites. A Canadian doctor who worked closely with Regenetek has claimed she was “scammed” (click here). It seems that most of the players involved are now in serious “cover your ass” mode, and investigations into Regenetek by the Royal Canadian Mounted Police and other Canadian government agencies are now underway.

If any or all of the allegations made about Regenetek hold true, I hope all who read this will see this story as a cautionary tale about the dangers lurking in some corners of the world of alternative medicine. Distressingly, there are living, breathing human beings out there who somehow feel no guilt in taking advantage of desperate people with horrible illnesses. Back in high school I took an art appreciation class, most of whose content I don’t remember. I do remember, though, something that my art teacher, Mr. Rosen, once said: “Be careful, there’s human garbage out there…” Don't ask me what that quote had to do with art appreciation, but it sure was memorable, and quite apropos of charlatans who seek to profit from the desperation of sick people.

Friday, January 9, 2015

A Call to the Cosmic Complaint Department…

R
Hello…?

Mr. Universe…?

Mrs. Universe…?

Sir…?

Ma’am…?

Anybody…?

Well, if you’re listening, I think there’s been a terrible mistake. You see, I’ve got this, well, this creeping paralysis, and it just won’t stop creeping… and creeping… and creeping. It’s creeping so much that it’s creeping me out, and I’m afraid it’s about to swallow me. So, before things get completely out of hand, I’d like to lodge a formal complaint and see if I can get some kind of a cosmic credit, or even maybe a do-over. You know, like back in the schoolyard, when in the middle of a game something would go wrong and all the kids would agree to just wipe the slate clean, and make believe that whatever happened never happened. Do you think we could work something out along those lines? A do-over? Just one?

The department store Nordstrom is famous for taking back almost any item, even if it’s been used, and I’m thinking I must be due some kind of refund or other form of galactic recompense. I mean, if Nordstrom can do it, certainly you, a universe filled with multiple dimensions and all kinds of crazy quarks and pulsars and quasars, must have some way of correcting what has obviously been a royal screwup. No, I don’t have a receipt, but I do have a birth certificate and an expired driver’s license, will that do?

Because, really, I’m pretty sure this isn’t the way things were meant to play out. I’m fairly certain that somewhere along the line the story of my life has gone way off script, like in one of those old movies where somebody accidentally picks up the wrong suitcase at an airport or train station and their fates get switched with the person who picked up their suitcase, and all sorts of wackiness then ensues. I’m positive that somehow my cosmic suitcase got switched, and I’m not at all happy with the ensuing wackiness.

When I was younger, I had a preview reel of what my life would be like running through my head, and I’m certain that literally feeling sick and tired all of the time while becoming ever increasingly paralyzed wasn’t in any of the selected scenes playing on an endless loop in my noggin. I was going to be a famous writer, rock star, or movie director, and my life was supposed to be filled with all kinds of exciting escapades and adventures, with just enough drama thrown in to make things interesting. I wasn't expecting a fairytale, but the screen in my head wasn’t showing a disaster flick, either.

Yes, yes, I know, all of that might seem ridiculous and downright juvenile, but I never claimed to be the paragon of maturity. After all, you’re only young once but you can be immature forever, right? And yeah, I’m well aware that almost no one’s youthful dreams ever really come true, but I never ever imagined that dreams could so easily turn into nightmares. Looking back I’ll admit that I didn’t always make the best choices, and probably made more than my share of mistakes, but surely I never did anything bad enough to deserve this, did I?

I mean, I just watched a television interview with the serial killer Son of Sam, who slaughtered six people and terrorized New York City for months on end back when I was a teenager, and he looked healthy as a horse sitting there in prison. Doesn’t he deserve a nice dose of creeping paralysis? Or how about the monsters who rape or hurt children, or plot horrific terrorist attacks that kill dozens or hundreds of people? I see them on the news all the time, looking all hale and hearty. How about a liberal sprinkling of progressive multiple sclerosis for them?

Believe me, you don’t have to tell me that I’m no saint, but even with all of my missteps and blunders and mistakes, the person I hurt worst of all most often seems to have been myself. Being sick has given me all kinds of time to look back and analyze my past, and at this point I think my regrets have regrets. I’d love to be able to use some of the insights all of this introspection has given me to live a more worthy life and forge a future free of the dunderheaded moves of my past, but the way things are heading if I think too much about my future I might just poop in my pants. As a matter of fact, without being granted a cosmic refund or credit or do-over, pooping in my pants could very well be a large part of my future. Gross. And things could very well only go downhill from there.

I’ll admit that getting sick hasn’t been all bad, and in some ways it’s given me freedoms that I probably otherwise never would have realized. I was able to stop working and start writing, which is probably what I should have been doing all along. Before this creeping paralysis crept so far I was able to take lots of photos and videos from my wheelchair, fulfilling creative impulses I’d long dreamt of indulging (without the wheelchair part), but I’m afraid those days are probably over. I sure have learned a heckuva lot and met all kinds of interesting people, many of them fellow patients, most of whom, FYI, also don’t deserve the crap they’ve been slapped with. It would be nice, Mr. or Mrs. Cosmos, if you could find a way to cut them more than a little slack, too. I’ve discovered emotional and physical resources within myself that I didn’t know existed, which has been kind of cool. But now things are getting pretty dicey, and I think I’ve squeezed all the positives out of this experience that there are to be squeezed. In all honesty, I’m getting scared. Really, really scared.

So what do you say? Can you give a brother a break? How about this: forget about making me better, just stop me from getting any worse, okay? Certainly not the ideal situation from my perspective, but I’ll take it. How’s that for a compromise? See, I’m reasonable, not like all those asshats in Washington. Can’t we work something out? A little give-and-take? I’m not sure I have all that much left to give, but I’m open to suggestions. I’ll be right here waiting for your answer, just a pimple on a flea’s ass in this ever-expanding universe, but I trust that you’ll know where to find me.

Hello…?

Hello…?

Wednesday, December 24, 2014

Ho Ho Heave

Well, it seems that I got a bit of an early Christmas present this year – in the form of THE FLU! Not a present I asked for, wanted, or needed. I guess I opened the window and in flew Enza…

Suffice it to say that the flu and MS don't play well together.  As a result of their unholy alliance, I'm forced to compose this blog post from bed, using my iPad and a blogging app. The iPad is a wonderful little device, but it's voice recognition capabilities suck, at least for composing anything longer than just a few sentences. So, I'm going to have to keep this short, if only to keep from getting so frustrated that I throw the thing across the room, and I don't think Santa has a new iPad for me loaded up and ready to go on his sleigh. I am hoping that he leaves a new central nervous system for me under the tree, and if he doesn't I'm prepared to bring a lawsuit.

Just wanted to wish everybody a very Merry Christmas, Happy Hanukkah, Great Kwanzaa, and also a Happy New Year, just in case I don't get the chance to post again before 2015 rolls around. May the holidays bring all of you happiness, joy, and good health. Multiple sclerosis is no gift, but the ability to rise above it, even if only occasionally, most certainly is. Please try to make good use of that gift whenever you can, if only to stick your thumb in the eye of this Grinch of an illness.

The following is probably my favorite Christmas song of all time, released by a band called The Royal Guardsmen in 1969. I had this record when it first came out, when I was six years old, and I played it over and over and over again. I was a super big fan of the Peanuts gang, and Snoopy was my favorite character. The heroic little beagle's struggles against the dreaded Red Baron fired my six-year-old imagination, and this song, celebrating a short and thoroughly unexpected break in their epic battles, sparked a tender emotion in me that still smolders 45 years later.

This is the long version of the song, complete with a rather elaborate intro mimicking a radio broadcast from somewhere on the Western front in the middle of World War I. I hope you enjoy, and as the Red Baron says to Snoopy at the very moment that Snoopy thinks his number is up, "Merry Christmas, My Friend(s)!"…


Friday, December 12, 2014

Winter’s Discontents

(Apologies to The Mamas and The Papas)

All the leaves are brown, and the sky is gray
I needed to go outside, on a winter’s day
Struggled with socks, sweater, coat; but when all was done and said
Barely had the strength, to just get back into bed…


Please excuse the above bad poetry (actually, it’s a gross disservice to poems to even call it poetry), but I just couldn’t resist. Here in New York City, winter is once again upon us, and along with the season’s cold and inclement weather, for us gimps the winter months are chock full of hurdles and obstacles that the able-bodied need give nary a thought. Simply donning get all of the cold weather gear needed to brace oneself against the chill can prove so damned difficult that the mere prospect of getting out of the house can be daunting all by itself.

In theory, at least, I like winter. The monochromatic palette of the winter months appeals to my black and white aesthetics, and I spent enough years living in Fort Lauderdale (yechh) to know that most human beings look better wearing several layers of clothing. Back in my healthy days I was admittedly something of a clothes horse, my closets brimming with cool duds. When I married my wife I owned more pairs of shoes than she did, and Karen isn’t a one pair for all occasions type of gal. My fetish for shoes goes way back, and my mom likes to tell tales of how, even as a toddler, I would torment shoe salesman by making them haul out box after box of footwear until I found a pair that met my precocious exacting standards. Why my mom allowed the little munchkin me such free reign to terrorize shoe store employees will have to remain a story for another day, but suffice it to say that I think she quietly got a kick out of my shenanigans.

But I digress, the subject at hand is the perils of winter for those of us trying to get through life with uncooperative bodies. Whereas I used to take delight in such winter wear as warm socks, comfy sweaters, and fashionable outerwear, these days all of these items have been transformed into potential instruments of torture. The right side of my body is almost completely defunct – weak, spastic, emaciated and largely paralyzed. My left side is still functional, but is weakening, seemingly by the day. Additionally, the more effort I exert the less functional my left side becomes, and with my fatigue levels at an all-time high my energy reserves leave much to be desired. All of this conspires to transform the formerly simple act of getting dressed into a feat of exhausting contortions, the anticipation of which often makes the thought of getting out of the house an extremely unpalatable option, even though being sequestered away inside my apartment for days and days on end is a recipe for mental malfeasance that also needs to be avoided. Quite the conundrum, then, once the temperature plummets.

During the warm weather months getting ready to go outside is a relatively simple affair, although struggling into a pair of elastic waisted shorts, a pullover short-sleeved shirt, and slip on shoes isn’t nearly as easy as it used to be. Still, even in my current dilapidated state it’s just a few minutes’ tussle and then I’m in my chair and out the door, willfully ignoring the fact that yes, my disease is indeed progressing. Once the temperatures drops below, say, 60°F, things get infinitely more complicated, and the very fact of my distressing physical decline from one season to the next cannot be avoided. Things that were merely difficult to do last year have now become almost impossible, and no amount of denial can paper over this reality.

The first bugaboo to be faced when preparing to venture out of doors all by myself is a pair of nefarious garments called “socks”. With a little effort and ingenuity I can usually get my left sock on without much calamity, but getting on my infernal right sock requires the use of a not so handy dandy device called the “Deluxe Flexible Sock and Stocking Aid” (click here). Basically, this contraption consists of a piece of relatively stiff but flexible material with two long straps attached. The flexible material can be rolled into a cone, on whose skinny end a sock can be scrunched up and pulled over (this miraculous feat is accomplished by my wife Karen the night before I’m due to make an appearance out in the world). In theory, then, a person can place the device on the floor and insert their foot into the wide end, and then by tugging on the straps pull the sock onto their foot using the flexible cone thing as a kind of guide. I’m sure this works quite well if the user has at least some dexterity in their right leg and arm. My right leg below the knee, though, has as much dexterity as a piece of overcooked fettuccine, so using this device is increasingly becoming an exercise in futility. The notion that I’ve become too gimpy to use a device made specifically for gimps thrills me to no end, let me tell you. As does the prospect of facing subfreezing temperatures without the benefit of a pair of warm socks. Sigh.

Next up in the cavalcade of whimsy that has become the process of my getting dressed are pants. Luckily, a couple of years ago I discovered that the Duluth Trading Company was selling fully elastic waisted decent looking trousers, which negated my needing to struggle with buttons or clasps to fasten my pants, which even back then had become nearly impossible. For whatever reason the company no longer offers these garments, but I was wise enough to stock up while the getting was good. If anybody knows of similar apparel currently available, please let me know. As long as they aren’t too, you know, ugly. Amazing how resilient vanity is, even in the face of progressing decrepitude, isn’t it?

After struggling with socks and pants, next in line are shirts and sweaters. Even the pullover variety are getting harder and harder to manipulate (the button-down kind may as well be radioactive as far as I’m concerned), and after struggling into them a somewhat disheveled appearance seems just about unavoidable, as a sleeve or shoulder always seems to be bunched up or stretched out in a way I can’t remedy given my limited amount of nimbleness. I suppose I should be happy that I can still don these garments, but there’s that dastardly vanity thing again. If I have to be a gimp I want to be a fashionable gimp, dammit!

Last comes the horror of all horrors, the winter coat. I used to wear all kinds of cool leather winter outerwear, retro car coats and flight jackets, but though these garments still hang in our closet, getting them on and fastened without assistance has become pretty much impossible. My mother-in-law, who is quite handy with a needle and thread, altered a standard military issue peacoat into a Velcro fastened wonder for me, for which I am eternally thankful. When closed up, the thing looks like any other peacoat, as mom fashioned the coat to make it look like the buttons are still fully functional, and folks are always surprised and tickled when I simply rip it open, which I try to do with a dramatic flourish. Still, getting the thing on and off of my stiff, spastic, and weakened body is no picnic, but I suppose we should be appreciative for whatever good graces still lay within our domain. So, yes, I’m quite grateful for my one-of-a-kind Velcro fastened peacoat. As I once said in a previous post, it’s like haute couture for the disabled.

Jeez, it looks like I just composed an entire blog post about the scintillating topic of my getting dressed. How horrifyingly mundane. Thing is, this freaking disease has made even the mundane a challenge, activities that had previously been taken completely for granted now fraught with anxiety, pushing my physical abilities to their limits and conjuring up a maelstrom of disheartening emotion. While the boundaries of those physical limits grow ever tighter as the disease continues its relentless progression I endeavor to live by the motto “use it until you lose it”, but as the losses mount the limitations imposed by these increasing deficits makes using what’s left harder and harder and harder. A decade ago, even on the coldest day of the year, I could be dressed and out of the house in 10 minutes, max. These days, that ever so humdrum of activities called “getting dressed” takes about 45 minutes at best, after which I’m often quite literally so physically spent that I’d rather get undressed and climb back into bed than go about whatever business awaits me out-of-doors. 

But there is life yet to be lived, and with dogged persistence my comrades in arms (weak and spastic arms, but arms nonetheless) and I  forge ahead as best we can, each displaying a quiet steadfastness that should be the fount of much pride, if I do say so myself. I will admit, though, that it’s hard to be prideful when you’re stuck with a sweater half on and half off, the nefarious garment doing its best impression of a straitjacket. Damned disease.

If you’ve made it this far through my long-winded description of getting dressed (egad), you deserve to be rewarded with the following musical delight, a version of The Mamas and The Papas “California Dreaming”, performed by the very underrated classic soul and R&B artist Bobby Womack, who sadly passed away earlier this year. Enjoy…