Sunday, July 30, 2017

Transabled

An able-bodied friend and I recently discussed the swirl of issues surrounding transgender people, spurred by the President’s sudden tweeted edict banning transgender volunteers from serving in the military. My friend expressed mixed thoughts on these matters, most of them based on the fact he just couldn’t identify with a person feeling they were somehow born into a body of the wrong sex. I replied that I too couldn’t entirely relate to the emotional state and cultural pain experienced by transgender folks, but my feelings should have no bearing on issues of fairness and equality. If all people are indeed created equal, any person's standing as an equal should not rely on my ability to fully grasp the intricacies of their circumstances.

As those thoughts turned into words and left my lips, the realization hit that in many respects I can identify with at least some of the feelings I expect transgender people experience. I’m in no way equating my own situation with theirs, but thanks to Creeping Paralysis the inner me is now almost entirely divorced from the body in which it exists. I’m not transgender, but I am transabled.

My concept of “me” is still that of the wiry six-footer that I used to be, the mannish boy who reveled in meandering strolls through the city, long-distance swims, a vibrant social life, and a full tapestry of sensual and tactile delights. The self I hold dear bears no relation to the embodiment of decrepitude that confronts me whenever I glance down and take a gander at the frame that sits in my wheelchair. The image staring back at me when I muster up the courage to roll up to a full-length mirror and take a peek is a complete stranger, at least from the neck down. With its bloated belly and ravaged limbs, that thing in the chair is most emphatically not the me that dwells inside of it. The old me lives on, cocooned in my heart and soul, trapped within a penitentiary of increasingly useless flesh and bone.

Though I try my best to quiet the frenzied feelings engendered by this gaping disconnect between body and spirit, at times there is simply no denying the emotional tempest raging within. Confusion, anguish, sadness, a gnawing yearning for what used to be – negative energies all, especially when directed inward. And though I try my best to silence or at least contain them, these destructive emotions seek out seams and points of weakness through which to burst, like grasping fingers of flame blasting through an apartment building window, threatening a conflagration that will take down the entire edifice. Thus far my attempts at emotional alchemy, seeking to turn negative energy into positive, have helped neutralize the threat, but the potential for self-immolation always lurks within.

As a transabled person, I often find myself an alien on my own planet, a victim of a variety of discriminations. Outside the cozy confines of my home, there are bathrooms I can’t use, restaurants and shops that apparently don’t want me as a customer, and passersby to whom I appear to be invisible. Indeed, maybe even something worse than invisible, a threat, a reminder of the ephemeral nature of their own sense of normalcy, a not-so-subtle hint that the supposedly solid foundations of their lives are in fact made of nothing more than gossamer.

The New Testament warns us to judge not, lest ye be judged. As members of a society increasingly riven by social and political divides – largely manufactured by would be puppet masters who seek to gain wealth and power by exploiting the very fissures they have created – it should be contingent upon every individual to live those words as a matter of personal and national survival. It’s far past time to reject outright the prefabricated outrage bombarding us and not fall prey to manipulators who have nobody’s good at heart but their own. We are all in this together, black or white, gay or straight, abled or transabled. If we allow the cracks in our society to further widen, we may all too soon find out what lies at the bottom of the abyss.

To my fellow transabled people I can only offer the same advice that I try to follow myself; make every effort to channel the despair and outrage you feel over being trapped in an increasingly unrecognizable body into some sort of positive force. As the great Johnny Lydon stated, anger is an energy. For your sake and the sake of your transabled brethren, make every effort to direct that energy outward, to vent it in some sort of constructive way if only to not let it combust within you. Cry out against a multiple sclerosis status quo that has made treating but not curing somehow acceptable, confront a medical industry that obscenely sees us first not as patients but as consumers, and offer comfort and understanding to those similarly afflicted.

To the transgender community, I tender my support, as somebody who is now experiencing the turmoil of being transabled. Although we may not live in the same house, I believe we might reside in the same neighborhood. I didn’t choose my circumstances and neither did you. Stay strong.


Celebration-Elizabeth Jameson
Created from MRA image of my brain.
My dear friend Elizabeth Jameson (click here), a disabled person who is far more comfortable with her imperfect body than I am with mine, recently gave the below Tedx talk. Her words and deeds perfectly illustrate the power of directing potentially negative energy outward, thereby forcing it into becoming something positive. Elizabeth’s MS journey found her turned into an accidental artist, transforming MRI images into thought-provoking pieces of fine art. My brain had the honor of being one of her subjects, and the prints she created out of my MRIs reveal that I have a couple of dancers jitterbugging away inside my skull. Thanks to Elizabeth, images of my brain have appeared on the covers of medical journals (click here) and textbooks (click here). Though MS has now rendered her quadriplegic, Elizabeth’s radiant spirit and message of everlasting hope come through loud and clear in this riveting and important talk. Enjoy…

(For those receiving this via email, you can view this video on the Wheelchair Kamikaze website – click here)


Thursday, July 6, 2017

Hunger Games: Back on the Chuck Wagon

I finished this month’s round of the Fasting Mimicking Diet (FMD) last Friday. This time around, in addition to the five-day prepackaged Prolon diet (click here), I added an extra two days of my own design. I once again found the five day FMD to be surprisingly easy to complete. As was the case last month, the third day on the diet was the hardest but even that wasn’t too terrible, just some hunger pangs and a few wistful thoughts of key lime pie. By the fourth day, though, any feelings of hunger had subsided, and days four and five were a breeze.

Since things went so well over the prescribed five days, I went ahead with my plans to push the boundaries and extend the length of the Fasting Mimicking Diet with an additional two days of even more draconian dieting. On day six I ate about 25 olives over the course of the day, and drank water and a glycerol based energy drink that’s supplied with the Prolon diet. Because Prolon’s glycerol concoction is mixed with water in amounts depending on the dieter’s weight, I had plenty left over from the previous five days to make up a few more batches for my extended version of the diet. One day’s worth of energy drink supplies about 100 calories, and 25 olives provides another 100, so on day six I consumed a total of roughly 200 calories.

On day seven I decided to go liquid only, and confined my intake to water and the energy drink. Even so, I felt absolutely no hunger, and the day was actually kind of anticlimactic. Don’t know what I was expecting, but after six days of extremely reduced caloric intake, adding a seventh during which I consumed only 100 calories presented no problems whatsoever. I wasn’t very active, but then again being stuck in a wheelchair doesn’t make for a very physically active lifestyle. Even if I were to drive my wheelchair 10 miles, the effort only requires a modicum of pressure from my left arm and hand. Not exactly a high calorie burning activity, thus the presence of the bowling ball I seem to be concealing under my shirt.

Speaking of which, over the course of the seven days I lost about 5 pounds, which is exactly what I lost during last month’s five day FMD. I expected to lose more weight given the extra two days of fasting, but for whatever reason my bowling ball seems loath to shrink. I may have to resort to hammer and chisel.

I broke my fast on day eight with a cheese omelette and a bagel and butter, thinking these items fairly easy to digest. Apparently, my body had other ideas, and about 20 minutes after finishing my meal I was hit with a giant wave of fatigue that forced me to bed, where I crashed for a solid four hours of deep, deep sleep. I suppose after seven days of hardly having to devote any energy at all to digestion, suddenly being confronted with an omelette and bagel gave my body quite the shock, and my “awake” circuit breakers were slammed off in order to muster up the oomph to deal with the introduction of some solid food. Dairy and wheat (gluten) might also have presented my body with some problems other foods wouldn't have, but I've never had a problem digesting either. In any event, lesson learned, I’ll break next month’s fast with a simple fruit salad.

As for any changes in my disease state, I think it’s still too early to tell. I did have blood tests taken after day five of this month’s FMD, so we’ll see if they show any discernible signs of changes in my body chemistry. At this point I plan on doing the diet for at least two more cycles, tinkering with the formula in consultation with my naturopath.

Oh, I did reach out to Prolon about discounting their diet kit for patients with chronic illnesses. I was told to send an email to the CEO, which I did but so far have received no response. I’ll try again in a week or so and keep everyone posted if I make any progress in this regard…

Saturday, June 24, 2017

The Hunger Games: Starved To Life

In keeping with my last post, I figured I'd give the title of this post a little cinematic touch.

Today (Saturday, June 24) I'm starting another round of the Fasting Mimicking Diet that I did last month. For those who missed  last month’s hoopla, I wrote posts recounting each of the five days of the diet, starting with a comprehensive explanation of how’s and why’s of the plan which you can read by (clicking here).

I’ll be using the same prefab diet marketed by Prolon (click here). A few people asked if I’m being sponsored by Prolon, and I promise you, I am not. I understand that the price of the diet kit is prohibitive for a lot of people, and I plan on getting in touch with the company and seeing if we can work out some kind of deal to make the kits more affordable for people with MS who want to try the diet but find the price too steep. Seems like it would make for good publicity for the company and be of benefit to many patients, a classic win-win situation. Meant to do that earlier this month, but, as usual, the days somehow got away from me.

Just a quick recap of what the diet entails: this is a strict reduced calorie diet, done in the hope (expectation?) that forcing the body into a fasting state will allow it to recalibrate some of the out of whack processes seen in diseases like MS, reduce inflammation, and jumpstart the body’s own stem cells to do some regeneration of damaged tissues. On day one of the diet consumption is restricted to 1150 calories. On days 2-5, this is cut further to 800 calories. The diet consists of prepackaged high nutrient soups, protein bars, kale crackers, olives, and a glycerol based energy drink. Other liquid intake is restricted to herbal teas and water. All of the food provided is vegetable-based.

Last time around I found getting through the five days surprisingly easy, and instead of feeling weak at the end of the diet, as I expected, I actually felt quite energized. So, this time around I’m going to take an even more draconian approach and try to extend the diet by two days, consuming only the energy drink, water, and herbal tea on days six and seven. I am doing this under medical supervision, and, rest assured, if I find that things aren’t going well during those extra two days, I’ll pull the ripcord and eat a fruit salad. But desperate times call for desperate measures, and my Creeping Paralysis isn’t showing any signs of relenting.

I was inspired to extend the diet after reading a 2012 article from Harper's, which recounts the long history of fasting for medicinal purposes and tells the tale of the author’s own successful 19 day fast. Incredible stuff. You can read the article by (clicking here). I plan on engaging in at least one more round of the diet after this month, probably more. My naturopath said she’s seen patients start to respond after the second round. Here’s to hoping. I didn't see any additional benefit from the first round other than some lost weight (5 pounds) and a temporary increase in energy levels, but for whatever reason I have found the idea of eating red meat absolutely revolting since doing the diet last month. Go figure.

For those foodies out there, I chose as my last meal before starting this month’s diet a very yummy Thai dish, crispy duck in red curry sauce with lots of pineapple, lychee nuts, and veggies. One of the great things about living in NYC is that you can get pretty much any type of cuisine delivered right to your door, and the aforementioned deliciousness arrived about 25 minutes after we placed the order online. The wonders of modern technology.

I’ll not recount every day of this month’s diet as I did last month, but I'll check in again when this cycle is over. Hopefully, I’ll make it through the entire seven days.

Here’s mud in your eye…

Monday, June 19, 2017

Some Wheelchair Kamikaze Movie Recommendations

And now for something completely different… I’ve been hard at work on an MS related article for an online general media outlet, which when finished will also eventually appear on this blog. I was hoping to have the piece done at least a week ago, but I’m finding it difficult to write for a general audience after so long writing specifically for people with direct knowledge of MS. This hurdle combined with the usual Creeping Paralysis crap (weakness, paralysis, fatigue, etc.) have combined to make writing the article something of a tough slog. No worries, though, I’ll get it done, and hopefully the editors of the internet site will find it to their liking. 

In the meantime, I don’t want to leave WK readers feeling abandoned. As my mind is filled with MS related flotsam and jetsam as a result of working so hard on the aforementioned article, I figured I’d go in a completely different direction for this blog post. How about some movie recommendations for others like me who find themselves with lots of time to stare at TV screens due to the vagaries and vulgarities of multiple sclerosis?

Here, then, are a few lesser-known films that I hope you might check out and find enjoyable/interesting. If any of you have already seen any of these films or watch them as a result of these recommendations, I’d love to know your thoughts about them. Please feel free to leave your own critiques in the comments section, below.


The Drop – This was James Gandolfini’s last film before his untimely death. It’s a modern film noir, centered on a Brooklyn bar that is used by underworld figures as a “drop” for their ill-gotten gains. Though there are a few action sequences, this is more a nuanced character study of the central players, who may or may not be the people we assume them to be when first we meet them. Kind of like life, no? The film features a tremendous performance by Tom Hardy, who I think is one of the finest actors of his generation. Gandolfini also gives a fine performance in his last screen appearance. Fans of The Sopranos – and others who like their films a bit dark and complex, like a zinfandel – should definitely give this one a look.

Paterson – A lovely, quirky film by director Jim Jarmusch, which focuses on the power and beauty of the little things in life; a box of matches, conversations overheard, the simple but simultaneously complex emotional dance that is love itself. The picture gives us a peek into the lives of a bus driver/poet (Adam Driver), his wife (Golshifteh Farahani ), and some of the characters who populate their neighborhood in Paterson, New Jersey. Filled with wonderful poetry (both visual and literary) and an affection for the small details that often go unnoticed, this is a gem that will leave you smiling and thinking about its many facets for quite a while after viewing.

20th Century Women – A kind of coming-of-age story of not only an adolescent boy, but also of the Bohemian adults who surround him. Set in Southern California circa 1979, a period at the precipice of the great social changes that would unfold in the coming decades (the rise of Reaganism, the Internet, the computerization of everything), 20th Century Women involves the lives of a teenage boy (Lucas Jade Zumann ) and his mother (Annette Benning), who share a house with several unconventional housemates. Elle Fanning stands out as the young man’s best friend/love interest, and the film hits all the right notes in regards to the time period, the complexities of personality, and the subtle – and sometimes not-so-subtle – emotional skirmishes of both adolescence and adulthood.

Hunt For the Wildepeople – a fun and funny film from New Zealand about a troublesome teenage boy (Julian Dennison) and a gruff older man (Sam Neill) who inadvertently find themselves the subjects of a national manhunt through the wilds of New Zealand’s outback. A witty script, endearing characters, and the natural beauty of New Zealand combine to make this sometimes silly, sometimes seriocomic film a deliciously diverting watch, one with a few laugh out loud moments, some over-the-top action sequences, and lots of heart. Not a film that reaches for profundity, but if you’re looking for some offbeat entertainment, Hunt For The Wildepeople will fit the bill nicely.

Green Room – I’m a big fan of horror films, but not the kind that feature ghosts, demons, or other supernatural creatures. Human beings can be horrific enough. Green Room finds a young punk rock band on tour in their dilapidated van far away from home, with money and patience running desperately short. The band inadvertently picks up a gig at a Nazi skinhead club, where they stumble upon a murder. Let’s just say the things go downhill from there. Patrick Stewart is terrific as the elder patron and leader of the skinhead crew, and the film is packed with tension, anxiety, and plenty of adrenaline inducing moments. I classify this as more of a thriller than a pure horror flick, though it does contain some gore. Definitely recommended for fans of the genre.

Irreversible – perhaps the finest product to come out of the “French Extreme” movement, 2002’s Irreversible is an unforgettable film that is definitely NOT for everybody. Over the last few decades the French have stretched the boundaries of the horror/thriller genre, with a number of films that leave nothing to the imagination but also, at their best, plumb the depths of the human experience. Irreversible depicts the events of one extremely tragic night in Paris, in reverse chronological order. In other words, the film starts with the ending credits, and the night’s sequence of events plays out backwards, last to first. Each sequence of the film is shot as a single take with no cuts, and the camera work by director Gaspar NoĆ© is as spectacular as it is unsettling. A terrific cast (Monica Bellucci, Vincent Cassel, Albert Dupontel) thoroughly inhabit the film’s largely ad-libbed script and make the events portrayed all the more gut wrenching. As the film spools out, some of our initial assumptions about the characters are turned on their head, and Irreversible is a cinematic experience that will impact you for days if not weeks afterwards. Again, this film is not for everybody; in fact, when screened at Cannes, large parts of the audience walked out during its jarring first 40 minutes. Those who remained were said to have sat in stunned, heartbroken silence for quite a while after it ended. The film graphically portrays terrible violence as well as graphic sexual acts, and contains an extended rape scene that illustrates the full, unremitting horror and unspeakable cruelty of that crime. It also contains one of the sweetest love scenes on film. That said, Irreversible is among the most exceptional pieces of cinema I’ve experienced. The violence portrayed is key to the film’s ultimate power, but again, Irreversible is not for those even slightly squeamish, or who might have personal issues with the events portrayed. But for viewers up to it, Irreversible offers an unforgettable cinematic experience.


I've also watched a whole bunch of the campy B-movie 70s horror flicks I so love (I Drink Your Blood, I Spit on Your Grave, etc.), but I know that flicks like these aren't everybody's cup of tea. Depending on what country you live in, most of the above recommended films are available on the popular streaming movie services (Netflix, Amazon Prime, Hulu). Again, I’d love to get readers' impressions of these films, as well as any recommendations of your own, in the comments section below. I’ll be back with our regularly scheduled MS related content in the next few weeks. In the meantime, happy viewing!

Monday, June 5, 2017

Remembering Bobby Kennedy

Attorney General Kennedy and Rev. Dr. Martin L...

Image via Wikipedia

(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted six years ago, in 2011. Given the current ruinously cantankerous political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this post is as relevant today as it was 49 years ago, and should be taken to heart by those of all stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website – click here)

I am a man with few heroes. 

It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 49 years ago today. 

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable gossip hungry media. Back then there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been realized. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against social injustice and for the weak and disenfranchised. 

Robert Kennedy started his political career working in the office of the now justifiably defamed Senator Joseph McCarthy, who at the time was in the midst of his vile early 1950s anti-Communist witchhunt, a hideous debacle which resulted in the destruction of the reputations and lives of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis. 

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968. 

Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of America one can only imagine that the arc of history might very well have been much more benign than the reality that ultimately came to pass. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss. 

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and likely unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination. 

Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…


Rest in peace, Bobby Kennedy.

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Wednesday, May 24, 2017

The Starvation Chronicles: That's A Wrap!

Yippee, I’ve reached the end of the road of my Fasting Mimicking Diet (FMD). I’ve successfully made it through five days of dramatically reduced caloric intake, and I’m no worse for the wear. In fact, I feel pretty darn good! Of course, it’s still way too early to judge whether the FMD will be successful in positively bending the arc of my Creeping Paralysis. I can at least report that I’ve lost 5 pounds since I started the diet last Friday.

I’d say the FMD regimen was much easier to get through than I anticipated. Day one, during which I consumed 1100 calories, was no problem at all. My caloric intake was reduced to 800 calories on day two, a level that was maintained throughout the duration of the diet. I faced the most difficulty on day three, but even that wasn’t all that terrible, just some pangs of hunger. At no point did I experienced excessive weakness or dizziness, but then again, it’s not as if I’m a whirling dervish of physical activity. I’m sure the diet would be harder on somebody who was more mobile and engaged in a physically active life.

That said, kudos to the company that markets the diet, Prolon. Although the prepackaged foods aren’t cheap (I paid $220 for my five-day kit), and I’m sure the company makes a nifty profit on the deal, the supplied meals did a good job of keeping me from being famished despite the severely reduced daily calorie load. The soups, nutritional bars, crackers, and olives provided in the kit have certainly done a good job of keeping me well-nourished even as they slashed my caloric intake dramatically.

I’m scheduled to have a phone consult with my naturopath tomorrow, and I expect that I will repeat this exercise in dining austerity again next month, and probably the month after that. As I’ve mentioned before in these Chronicles, my naturopath – who works in my MS clinic and specializes in treating MS with natural remedies – has reported very good results in one of the first few patients who tried this diet. Of course, MS is a tricky beast and it’s nearly impossible to pin down just why any individual patient experiences upswings are downswings in their disease state, but sound scientific research does suggest that a starvation diet can trigger beneficial changes in body chemistry and kickstart cell regeneration.

At the very least, committing to the diet and seeing it through has provided me with a perceived mechanism to strike back at the disease, and that alone has given me an emotional lift. I find my mood darkens when I’m stuck in the doldrums between treatment options, and especially when it seems that those options may be running out. By hook or by crook, and with the help of a neurologist who is open-minded and not afraid to experiment, I’ve managed to occupy most of the 14 years I’ve spent dealing with this crap with active efforts to fight back. Unfortunately, none of these attempts to thwart the disease have proven to be of any lasting value, but maybe, just maybe, one of these days my efforts will strike paydirt.

A huge thanks to all the good folks who’ve left comments and sent notes of encouragement and advice these past five days. Despite my propensity for verbosity, I really don’t have the words to express my appreciation to each and every one of the readers who have been my virtual copilots during this flight of fancy starvation.

Finally, since I’m supposed to ease back into a regular diet starting tomorrow by sticking with fruits, vegetables, breads, and pasta, I’m thinking that a simple omelette, some fruit salad, and a bialy with a touch of cream cheese will make for a nice digestible lunch. Later, perhaps some linguine with white clam sauce for dinner. Yum!

Okay, signing off – 5 pounds lighter, with an empty stomach and a heart full of hope…

Tuesday, May 23, 2017

The Starvation Chronicles: Day Four

A Basket of Bialys
Well, that’s four down, one to go.

I’ve finished the fourth day of my five day Fasting Mimicking Diet, and I’m happy to report that today was relatively easy. Much better than yesterday, when hunger pangs and a lack of olives on the menu had me out of sorts. Today I’m in sorts. And shorts; it’s hot in my apartment.

According to the company that markets this diet, Prolon, the body adjusts to the program’s reduced caloric intake after a few days. As is evidenced by how I feel today, I suppose they know what they’re talking about – despite their sadistically depriving me of olives on day three.

Speaking of olives, today was chock full of them. I got to scarf down a whopping 10 olives today. For those who are undoubtedly wondering, the olives supplied in this diet are of the green variety. I typically favor black olives, Kalamata olives to be exact. But the greenies will do in a pinch, and in a martini. Which I can no longer drink because of my MS, as alcohol consumption makes my nervous system go kablooey. Cruel, dastardly disease. If I were to wake up magically cured tomorrow, I’d go on a bender that would put even Hemingway to shame.

After yesterday’s Starvation Chronicles diatribe about olives, I received some very interesting comments and emails. Much to my surprise, it seems that some people hate olives. I can’t even imagine. Have the olive haters ever had really good salty briny delectable fresh olives, not the horrible rubbery bland things that come out of a can? And do olive haters also hate capers, which are kind of like tiny olives supersaturated with flavor? I would think it would be impossible to hate olives and like capers, or vice versa. Please, report back, inquiring minds want to know.

Okay, now that I’m sitting here writing about olives and capers, I’m getting hungry. Suddenly visions of a toasted garlic and onion bagel with cream cheese, smoked salmon, and capers is crowding out all other thoughts from my mind. Must. Stay. Focused.

One of the things I missed most about New York when I lived in Florida was the bagels. Well, that’s not exactly true, there were a whole lot of things I found sorely lacking in Florida, including brain cells, but I won’t go into details for fear of insulting any Floridians reading these pages. But back to the bagels. They do have bagel shops in Florida, but whatever the things are that those shops sell, they’re not bagels. Good God, they put things like strawberries and cinnamon and raisins and cheddar cheese in their “bagels”! Ugh! Blasphemy!

I’ve got news for you, just because a bread product is round with a hole in the middle does not make it a bagel. If it contains any sorts of fruits, berries, cinnamon, peppers, or cheese within the dough itself it’s a Danish or some other sort of pastry. No self-respecting bagel would put up with such adornments; an honest to goodness bagel is topped strictly with the following, either individually or in combination: chopped onion, garlic, salt, sesame seeds, or poppy seeds. I usually go for an “everything” bagel, which includes all of the above. Also, pumpernickel bagels are allowed, and even preferred by some native New Yorkers.

Now, what really sends me into writhing wriggling culinary ecstasy is a good bialy (click here). For those sadly unaware that such things exist, bialys are a close cousin to the bagel and are a foodstuff I’ve never encountered outside of New York City. Whereas a bagel is boiled and then baked, a bialy is just baked. In place of the bagel’s hole there is a deep depression in the center of a bialy, a vessel filled with bits of garlic and onion, which are mixed in with the dough as well. The damned things are indescribably delicious, positively bursting with flavor, especially when toasted and adorned with just a schmear of cream cheese. There is no more perfect combination in the culinary universe. None.

When I was a kid you could get a bialy on practically every street in New York City, but these days, as the city has changed and mutated into something I sometimes barely recognize, the bialy is becoming an endangered species. My heart bleeds for those untold millions who have never savored the pleasures of the bialy, and tragically, most likely never will.

All right, now that I’ve got myself all worked up, I’d better proceed with just a quick rundown of my food intake for today. Lunch was a nutrition bar, vegetable soup, and olives. Dinner was quinoa minestrone soup, olives, and a Choco crisp nutrition bar for dessert. The Choco crisp bar is just a little thing, and for whatever reason tonight’s was much more chocolatey than the two I’ve previously eaten during this diet. Perhaps the Prolon people were trying to make up for yesterday’s lack of olives.

Unfortunately, tomorrow, the last day of the diet, also includes no olives. I can now see the light at the end of the tunnel, though, so I’ll soldier on, despite the dearth of those luscious green orbs.

As for Wednesday, well, I’m supposed to transition slowly back to a regular diet, but something tells me there just might be a bialy in the offing…

Geez, when wheeled up to the computer I wondered what the hell I was going to write about. I sure can write a lot about nothing. Sorry about that…

Monday, May 22, 2017

The Starvation Chronicles: Day Three

I’ve now finished day three of my five day Fasting Mimicking Diet (FMD), during which my caloric intake has been drastically reduced. The how's and why's of the diet are explained in full in my first Starvation Chronicles post (click here).

Today turned out to be a “no olives for me” day. Suffice it to say I was heartbroken, as the heretofore steady supply of olives on the menu has been my favorite part of the diet. On the spectrum of heartbreaks I have experienced in my lifetime, I will admit that this one lands near the bottom of the heap. Still, right about now I would kill for an olive.

I found day three of the FMD to be the most difficult day yet. I was dealing with pangs of hunger most of the day, but nothing I couldn’t handle. Yes, I am a manly man. Of course, some olives would have been nice. Do the originators of this damned diet have even one iota of understanding about just how important olives can be to a person, just what a lifeline they can represent to the desperate? Apparently not. I feel for them; those sad, misguided beings.

Instead of olives, I was treated to some kale crackers, which, though not bad, are NO SUBSTITUTE FOR OLIVES! Would it have been so hard for the diabolical diet designing geniuses who concocted this plan to have included even one measly olive to help get me over this hump day? Thoughtless, heartless, olive depriving bastards. A pox on them and all their ancestors. I don't feel for them, I don't! There, I said it.

In addition to the kale crackers and lack of olives, today I consumed tomato soup (IMO, the best of the soups contained in the kit) along with the aforementioned crackers for lunch, and minestrone soup (not bad, but tastes more like a barley) and a nutritional bar for dinner. All through the day I drank a proprietary glycerol based energy drink, which, sadly, contained no olives. I also had the prescribed 2 cups of herbal tea. Again, no olives. If there is one hard fact this diet has driven home, it’s that olives should be a staple of every meal, snack, and drink. And, yes, I’m talking martinis. Very dirty martinis.

Tonight, instead of sugar plums I’m sure I will have visions of olives dancing in my head. Might I be getting a bit olive obsessed? But who among you can blame me, are not olives the very stuff of life itself? Water, air, soil, sunshine and olives, the scientifically acknowledged prerequisites for the development of life, on this world or any other. Why do you think, eons ago, the first crude single celled organisms started to divide and become ever more complex creatures? Surely, only in the hope that one day they might consume an olive.

Checking tomorrow’s menu, I’m over the moon to discover it includes two servings of olives. I tremble in anticipation…

Sunday, May 21, 2017

The Starvation Chronicles: Day Two

Okay, it’s about time to cross day two off of my five day Fasting Mimicking Diet (FMD) calendar. Today my caloric intake was reduced from 1100 calories on day one to 800 calories, the level which will be maintained for the remainder of the diet.

For those joining this party late, you can read more details about the diet and my reasons for doing it in my introductory Starvation Chronicles post (click here). Here’s a quick Cliff Notes version (do they still make Cliff Notes?): I’m engaged in a five-day restricted calorie diet that is supposed to mimic starvation, in order to change body chemistry and kickstart my body’s natural stem cells to help regenerate damaged tissues. The diet uses products designed and marketed by a company called Prolon (click here) which has published studies (click here) that show the Fasting Mimicking Diet reduces autoimmunity and encourages cell regeneration. The diet is also used for help cancer patients protect against the side effects of chemotherapy, and many people use it in the hopes of increasing longevity.

Quite a few folks have asked if this is a ketosis diet, and after doing some investigation I can tell you that it is not. Without getting too deep in the weeds, a ketosis diet is very high in fats, and includes lots of meats and dairy products, with the intent of inducing the body into a ketogenic state in which body fats are broken down to fuel metabolic functions. The FMD I am doing uses only plant-based foods, is limited to five days, and does not induce ketosis.

My second day on the diet was a little bit more difficult than the first, which I suppose is only to be expected since my caloric intake was slashed by nearly 30% from yesterday’s already reduced intake. I was quite peckish between meals, but I’m feeling pretty good now. Since it’s good practice to live in the moment, I guess everything is just hunky-dory.

Really whets the appetite, no?
As I mentioned in yesterday’s post, I typically eat two meals a day because of my naturally nocturnal predilections, which generally preclude breakfast. Today’s first meal consisted of mushroom soup, a nut based nourishment bar, and six olives. This was accompanied by spearmint lemon tea. In addition, on day two the diet adds an energy drink, mixed at home, made of water, plant derived glycerol, and some hibiscus tea for flavor. This energy drink will be a staple for the rest of the diet. At the left is a photo of meal one in the packaging provided by Prolon (excluding the tea and energy drink). The mushroom soup was quite good, the nourishment bar palatable, and olives are a favorite of mine, so no complaints there.

I can't believe I ate the whole thing…
My second meal, pictured in all its glory at the right, consisted of a minestrone and quinoa blend soup, some more olives, and a small “choco crisp” nourishment bar, washed down with spearmint tea and more of the energy drink. As you can see by the photo, it was a sumptuous seven course meal, if you count each olive as a course. As I mentioned above, I was feeling hungry before eating meal two, but, surprisingly, it proved to be a satisfying nose bag (a little equine reference in honor of today’s Preakness Stakes). Maybe the people who designed this diet know something.

That’s it for now, but watch this space for another scintillating report on day three of The Starvation Chronicles. This is your intrepid Fasting Kamikaze, signing off…

Saturday, May 20, 2017

The Starvation Chronicles: Day One

As I wrote yesterday (click here), from now through Tuesday I’ll be subjecting myself to a Fasting Mimicking Diet (FMD), in the hopes that severely reducing my caloric intake for five days will force changes in my body chemistry and cellular activity, with the goal of reducing autoimmunity and jumpstarting my natural stem cells to regenerate damaged tissues. The diet is also used by some in the hopes of increasing longevity, but that’s not my immediate goal. As far as I’m concerned, life is all about quality, not quantity.

I’m happy to report that day one is in the book. Or, in this case, on the blog. And so far so good, I must say that today’s 1100 calorie intake was easy peasy lemon squeezy (a term that is used all too rarely in medical literature). As I write this, I’m not feeling hungry at all.

I’m using prepackaged foods provided by a company called Prolon (click here). Though the company recommends a daily menu of suggested meals using the items provided for each day, they do state that meals can be combined any which way a person chooses. Which is great, as I am an avowed night owl – I’m writing this at 2:30 AM – and due to of my odd schedule I typically only eat two meals a day, skipping breakfast because I don’t do mornings. As an old jazz man once said, I’d prefer not to know that there are two 10 o’clocks in one day.

So, I combined the suggested breakfast and lunch items into one “big” midday meal. It consisted of a tomato soup that was shockingly yummy, a nutritional bar made up of a variety of nuts, coconut, and honey that was not half bad, some crackers made of kale, seeds, and cumin that had a nice little kick to them, and five green olives. I love olives. My lunchtime beverage was spearmint-lemon herbal tea, and some water. The diet allows you to drink as much water as you want.

Tonight’s dinner was minestrone soup, which actually tasted more like a barley soup. Since I was expecting minestrone, at first the taste was a little offputting, but once I decided I was actually eating barley soup it was much more palatable. We do indeed create our own realities. Along with the soup I had another one of those nutritional bars, and for dessert a different, smaller nutritional bar that contained some cocoa. Spearmint tea was the beverage of choice.

All in all, a very pleasant start to this starvation diet journey. Tomorrow I drop down to the 800 calorie mark, which will be maintained for the remaining four days. According to Prolon, the second day is usually the hardest, as the body then adjusts to the new diet regimen. Call me crazy, or maybe even a nut job, but I feel like today’s easy start has removed some of the pressure I was feeling about the diet. Who knows what the next few days will bring?

Oh, a tremendous thank you to everybody who responded to yesterday’s announcement of my impending diet with comments (both here and on Facebook) and notes of encouragement and advice. I wish I had the time and energy to answer each individually, but please know that they have all been read and greatly appreciated.

Watch this space for tomorrow’s 800 calorie update…

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I'm happy to announce that Healthline.com has named Wheelchair Kamikaze one of 2017's best MS blogs. A big thank you to Meagan Jones and the rest of the Healthline team. I urge all WK readers to head on over to Healthline's 2017 list (click here) and check out the other chosen blogs. There's a lot of really good stuff there!

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Friday, May 19, 2017

The Starvation Chronicles: Prologue

Starting Friday, May 19, I’ll be subjecting myself to a five day starvation diet, in an attempt to beat back the disease that is slowly but surely consuming me. In effect, I’ll be reducing my consumption of food to near starvation levels in order to stop my illness’s consumption of my bodily functions. Yes, I’ll be crossing the junction of function consumption.

As I’ve talked about before on these pages, I work closely with a naturopathic doctor who is employed at my MS clinic. She's is one of the sharpest people I’ve ever met, and is a heckuva nice person to boot.

She recently approached me with a rather radical idea, but one based on sound scientific research and her own clinical experiences – asking if I would be willing to try a Fasting Mimicking Diet (FMD), in which caloric intake is dramatically reduced for five days. I was already acquainted with research which demonstrated that such a diet had increased the lifespans of laboratory animals as much as 25%, and that it had the potential to positively impact chronic illnesses and even cancers as well. When my naturopath told me that she had seen some rather startling results in one of the first few MS patients she had convinced to try this diet, I was all in.

The diet is designed and marketed by a company called Prolon (click here), which supplies five days’ worth of plant-based foods that provide nourishment while tricking the body into thinking that no food is being consumed. Thus, the name Fasting Mimicking Diet. During the diet, food consumption is limited to specially formulated vegetable broths, nutritional bars, herbal teas, and snacks (such as a few olives). Each day’s “meals” come in their own individual box, filled with packets of that day's allotted foodstuffs.

The first day of the diet caloric intake is reduced to 1100 calories, and during the remaining four days this is further reduced to 800 calories per day. On day six regular foods are gradually reintroduced, starting with fruits, rice, pasta and other easy to digest items. For the rest of the month a regular diet can be resumed. Dr. Bates (my naturopath) would prefer me to try to stick as much as possible to a Mediterranean diet (low-fat, with lots of fish and veggies).

In scientific studies, the FMD diet has been shown to promote and maintain healthy levels of a variety of inflammatory and regenerative markers. In an animal model of MS, FMD reduced inflammation, suppressed autoimmunity, and promoted the regeneration of damaged nervous system tissues (click here). The diet appears to stimulate the body’s own stem cells. While all this sounds terrific, what really sold me was Dr. Bates telling me that she had seen verifiable improvements in the mobility of one of the first patients who had agreed to give the diet a go.

I figure that if worst comes to worst and I don’t get any disease benefit from this experiment, I'll lose a few pounds (I’m developing the physique of an elephant seal) and the diet will allow my body to detox. In addition, it’ll be kind of fun to take on the challenge (he says with a full belly). Besides, this will give me the perfect excuse to lay around and binge watch some cheesy 60s and 70s horror flicks (queue up “Gore Gore Girls”). For the sake of my wife, I think I’ll steer clear of any films having to do with cannibalism. I'd hate to have Karen wake up to find that she's missing a finger or two. I wonder how many calories there are in a finger? Gives a whole new meaning to the phrase "finger food".

So, I expect that over the next five days I just might experience a few pangs of hunger here and there. I might even get Jewish VD (Veak and Dizzy, said with a Yiddish accent). I’ll report back at the end of every day to tell you guys how it’s going, as long as I have the strength to guide my wheelchair to the computer and put on my voice recognition headset. Of course, if I do experience any benefit, it won’t be for several months, but I’ll keep y’all apprised of all such developments (hey, I managed to affect Yiddish and southern accents all in the space of four sentences!). I plan on doing the diet for at least two or three consecutive months.

Wish me luck…

Monday, May 15, 2017

Ocrevus: Dialogue Between Two Neurologists

Yes, folks, another post on Ocrevus. Hope I’m not beating a dead horse here, but I feel this is a very important subject given the amount of hyperbolic press coverage this newly FDA approved drug has received. The Ocrevus picture is a complicated one, especially for patients with progressive MS. It’s now the only approved drug for this form of the disease, which is a good thing. Unfortunately, there are still questions regarding the efficacy and risk associated with Ocrevus when used on the progressive MS population. Much of these questions can be accounted for by the drugs newness to the market because its risk/reward profile in a real-world setting has not yet been established. While this is true of all new drugs, the fact that the progressive MS population is clamoring for treatment options puts these uncertainties under a bright spotlight.

I first read the below email exchange between two MS neurologists about a week ago on the invaluable MS Research Blog (click here), which is written by the MS neurologists and researchers at the Barts and London School of Medicine in Great Britain. The neurologist who posted this exchange is Dr. Giovanni Giovanonni, who was one of the co-authors of the Ocrevus progressive MS trial research paper. The other neuro involved in the exchange preferred to keep their anonymity. I posted a comment to Dr. Giovanni asking if I could repost this in Wheelchair Kamikaze to give it further exposure, and he agreed. A big thank you to him.

Here then, is the dialogue on the use of Ocrevus in PPMS between Dr. Giovanonni and his anonymous colleague. Just to be clear, in all the verbiage between the linebreaks "I" refers to Dr. Giovanonni, and "his/her" refers to the other neurologist. NEJM is the New England Journal Of Medicine, in which the Ocrevus PPMS trial results were published. I’ll add my two cents at the end of this post.

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I have started-up another email exchange with a colleague about the ORATORIO (ocrelizumab in PPMS) study. I have asked him/her if we could have this debate in the open on the blog, but he/she has asked to remain anonymous.

When I respond to MS-related questions that may be of interest to the broader community I prefer to answer them in the open, which is why I have redacted the discussion and posted it below:

The following are his/her primary questions:

'You were a co-author on the ocrelizumab in PPMS NEJM manuscript, which didn’t really address the issue of age/inflammatory activity as markers for treatment response. Both the rituximab data in OLYMPUS and the Gadolinium data in the supplement of the NEJM article indicate that the population that benefits is the young patient with inflammatory activity. B cell depletion is not benign, especially in the older population, and the ocrelizumab manuscript infers that all PPMS patients should be treated with ocrelizumab. Are you really treating all of your PPMS patients with B cell depletion, and, if not, why didn’t you push for more discussion about this issue in the NEJM paper?'

My response:

We tried to restrict the trial population as much as possible to mirror that of the responder subgroup in OLYMPUS (rituximab in PPMS) study. Please note the following specific inclusion criteria for the trial:

Age cut-off of 55 years of age

Disease duration of symptoms of less than 15 years in patients with an EDSS score of more than 5.0 at screening or less than 10 years in patients with an EDSS score of 5.0 or less at screening

Documented history or the presence at screening of an elevated IgG index or at least one IgG oligoclonal band detected in the cerebrospinal fluid

​The presence of absence of Gd-enhancing lesions was not part of the inclusion criteria and hence should not be used to select patients for ocrelizumab treatment in the real-life situation. The detection of Gd-enhancing lesions also depends on the frequency of imaging. If you are going to select patients for treatment I suggest you use the the three inclusion criteria above as your guide. I predict that these will probably exclude 70% of a typical PPMS clinic population.

Please note that the trial population in the ORATORIO study was not typical of other PPMS trials; the population was younger, less disabled, had higher proportion with Gd-enhancing lesions at baseline and higher on study number of relapse​s. As I have said before there were strong trends in both the Gd+ve and Gd-ve cohorts, therefore, we shouldn't limit treatment to patients with Gd-enhancing lesions only. If we did this we would be denying many patients access to an effective treatment.

I personally don't buy into MS being 2 or 3 diseases. MS is one disease and PPMS is simply more advanced MS; if patients are active they should be offered treatment regardless of their presenting clinical phenotype.


Regarding my own practice. We can't use rituximab in the UK; the NHS won't pay for it and are unlikely to pay for ocrelizumab either. NICE will assess the cost-effectiveness of ocrelizumab based on its price for relapsing-forms of MS and in PPMS ocrelizumab will be compared to best-supportive care. The latter means ocrelizumab is unlikely to pass the NICE cost-effectiveness threshold. I am hoping that Roche, who will be marketing ocrelizumab in Europe, approach NICE and the NHS to discuss differential pricing and to offer ocrelizumab at a cheaper price for patients with PPMS. Differential pricing is a 'hot potatoe' and I am not sure the NHS is ready for it; but I live in hope for my patients.

Please note ocrelizumab has yet to be licensed in Europe and we can't assume its license will be the same as the US.

At present we offer our patients with active PPMS off-label cladribine, a relatively cheap B-cell depleting agent. Like all DMTs it is a choice and not all patients take-up the offer. I am also aware that in the US a large number of neurologists are still using low-dose methotrexate in PPMS.

I am not sure we have enough data on B-cell depletion in PPMS to make a call on whether it is benign or non-benign. Hopefully, good quality safety data will emerge from post-marketing surveillance studies. I suspect as with all immunosuppressive therapies it won't be benign. I would recommend telling all your patients about infusion reactions, the herpetic infection risk, the possible malignancy risk and the likelihood that in time they may develop hypogammaglobulinaemia and need Ig-replacement therapy. Please note we have a large amount of clinical experience in children with agammaglobulineamia and these kids do well long-term, as long as we keep the Ig levels normal.

I am not sure you are correct in suggesting that we are recommending ocrelizumab for all-comers. The trial population defines the group we are advocating its use in. I am surprised the FDA did not include the CSF findings in the label. If I was a regulator I would state that CSF-ve PPMS should not be treated with ocrelizumab.


Regarding discussion in the NEJM paper; the editors of the NEJM essentially cull all speculative discussion and limit the discussion to issues in the trial. NEJM editors are renowned for rewriting submitted papers to keep them consistent for style. The NEJM article is not the forum for the kind of discussion you want to have. I suggest we have this discussion on the blog.

His/her response:

'Thanks for your prompt and thoughtful response. It was very helpful. When do you think we’ll be able to see the age cutoffs for the study? Given that the average age for the study was 45 (and for OLYMPUS it was much higher—about 50), there should be enough patients who entered the study between 50 and 55, to know whether the relatively small treatment effect in the whole group was made up primarily of those under 50. I would certainly like for my older PPMS patients to avoid the potential adverse effects of this drug if there is no clear benefit for this group.

I agree with you about MS being one disease( except possibly for unusual outliers, like the NMO story). So, wouldn’t you expect B cell depletion to work for the younger, more active SPMS patients, too?'

My second response:


There are numerous post-hoc subgroup analyses that are ongoing. I will ask the trial team to include your question about age on the list.


Regarding SPMS; yes, I would expect B cell depletion to work for SPMS as well. I wouldn't limit it to young, or early, SPMS either. Based on our length-dependent axonopathy hypothesis I would even expect patients in wheelchairs to benefit, however, the benefit will be limited to arm and bulbar function. The latter is why we are lobbying Roche to do a trial of ocrelizumab in more advanced MS, with the primary outcome being upper limb function.

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Just a few points that grabbed my attention when I first read this exchange: first, I was surprised to read that the Ocrevus PPMS trial was specifically designed to test the drug on patients identified as likely responders, based on the “failed” rituximab PPMS trials, which were held about 10 years ago. Even though that trial had been officially deemed unsuccessful, a subset of patients were identified who did respond well to the drug (younger, less disabled, shorter disease duration). Although I highly suspected that the Ocrevus trial was intentionally frontloaded with likely responders, I’d never before come cross info confirming my suspicions. I’m not aware of any other study that has been designed in such a fashion. I believe most drug trials try to mirror the general demographic makeup of the patient population in question, although almost all MS trials exclude patients with higher degrees of disability. Due to this trial design, Dr. Giovanonni  states that he’s surprised the FDA didn’t put some sort of prescribing restrictions on the Ocrevus label.

I also found it quite interesting that Dr. Giovanonni states that the prescribing guidelines for the drug, if based on the Ocrevus trial design, would generally exclude 70% of the PPMS population. This in the face of the FDA giving a blanket approval for Ocrevus to treat PPMS with no restrictions whatsoever. While I fully understand why many PPMS patients are anxiously awaiting being offered the drug, I fear that many may have unreasonably high expectations based on the breathless press coverage that greeted the Ocrevus FDA approval. Of course, there is the “any port in a storm” factor. With the dearth of other available treatment options, why not give the drug a shot, especially if a patient finds themselves being ravaged by the disease? It is, of course, up to each patient to decide how aggressively they want to treat their illness, and their tolerance for risk.

Dr. Giovanonni also makes mention of hypogammaglobulinaemia, a general term for a patient having an insufficient number of antibodies in their bloodstream to fend off infections. While it makes sense that Ocrevus could cause this condition, since the drug wipes out a patient’s B cell population and B cells produce antibodies, I hadn’t heard of this being of much concern. Rituxan (rituximab) also obliterates most B cells, and that drug has been used off label to treat MS and other autoimmune diseases for years, to the best of my knowledge without necessitating supplementation of patients’ antibodies via the use of IVIG infusions. PLEASE NOTE: Dr. G has explained, in the comments section below, that long term Rituximab therapy does indeed cause this antibody deficiency. I stand corrected. Thank you, Dr. Giovannoni. 

Lastly, I found it intriguing that this drug might not be made available to PPMS patients in Great Britain, based on its cost-effectiveness versus supportive care. This means that in the eyes of the NHS, Great Britain’s national healthcare system, the relative effectiveness (or lack thereof) of Ocrevus in treating PPMS may not warrant its approval for use, simply because supportive care is less expensive and the impact of Ocrevus on the disease is minimal enough to disqualify it based on the drug’s high price tag.

Having said that, let's not forget that slowing the progression of disease, even if only for a portion of the PPMS population, is no small feat. In addition, the beneficial effects of Ocrevus may accumulate over time, a data point that wouldn't have been caught during the short two-year clinical trial window. Any slowdown in the progression of disability provides patients valuable time during which more effective treatments work their way through the pipeline. While I have concerns about the drug itself, my primary beef is with the way the drug has been portrayed in the media, with eye-popping headlines and hyperbolic coverage by reporters without the depth or breath of experience to look much past the pharmaceutical company press releases. Let's hope that all MS neuros do their due diligence regarding Ocrevus, and keep their patients well-informed about reasonable expectations of benefit and also the downside potential of the drug. It's always important to keep in mind that doing nothing has tremendous proven downside potential, as well.

In short, while Ocrevus does appear to be quite potent in treating relapsing MS, those with progressive MS should likely keep their expectations in line with what was seen in the PPMS trial results. The drug displayed a 25% slowdown in the rate of disease progression, which although not insignificant is certainly not the miracle that the media has made it out to be. Patients shouldn’t expect Ocrevus to reverse their symptoms, or even stop the progression of their disease. Make no mistake, slowing down progression is a very good thing, but according to the above dialogue many PPMS patients may not even see that by way of benefit. Of course, there is always the possibility that the drug proves to be more effective in clinical use than was seen in the phase 3 trials, which is something we have seen with several other drugs.

All that being said, please allow me this one brief little editorial interlude:

HEY, ALL YOU MS NEUROLOGISTS  OUT THERE! STOP STUFFING YOUR POCKETS WITH PHARMACEUTICAL COMPANY MONEY AND START LOOKING FOR THE ACTUAL CAUSE OF THIS DAMNED DISEASE! ENOUGH WITH THE “TREATMENTS” WITH POTENTIALLY HORRIFIC SIDE EFFECTS! WE WANT CURES, DAMMIT! AND UNLESS YOU FOLKS STOP LOOKING FOR NEWER AND FANCIER WAYS OF TINKERING WITH THE HUMAN IMMUNE SYSTEM AND START LOOKING FOR THE ACTUAL REASON WHY THE MULTIPLE SCLEROSIS IMMUNE SYSTEM GOES BONKERS, WE WILL NEVER, EVER, GET A CURE! AN IMMUNE SYSTEM ATTACKING ITS OWN BODY IS A SYMPTOM, NOT A CAUSE! WE PATIENTS ARE SICK AND TIRED OF BEING SICK AND TIRED, AND IF WE WEREN’T SO SICK AND TIRED WE MIGHT AT THIS VERY MOMENT BE FORMING LYNCH MOBS! SO GET WITH IT, OR ELSE!!! WHEELCHAIRS CAN BE USED AS DEADLY WEAPONS!!! AND DON'T EVEN THINK OF ASKING ME HOW I KNOW THAT!!!

Okay, feeling a bit calmer now… And, yes, I realize there are MS researchers and neuros who aren’t inflating their incomes with legal pharmaceutical company bribery while their patients clamor for truly momentous breakthroughs. Those folks should be applauded, along with those pursuing creative approaches for tackling multiple sclerosis. As for the others, well, I still want/need their help, so I better keep my mouth shut…

Thursday, April 27, 2017

At Long Last, the Answers I've Been Seeking! (Or, Only His Hairdresser Knows for Sure)

Ever since my diagnosis almost 14 years ago, I’ve been on a single-minded quest seeking not only the cure for the scourge that afflicts me but also answers the intangibles of my disease – the how’s, why’s, and where’s of my predicament. More precisely, just how did I get sick, why did I amongst the masses get stricken with this dreaded creeping paralysis, and just where might I have picked up this curse. Inscrutable questions, yes, and queries a wiser soul would probably have best left undisturbed, but despite my knowing better I have never been able to stop my mind from pondering these imponderables.

I can now breathlessly report, dear readers, that my seemingly quixotic mission to unearth truths that I feared might very well be beyond comprehension has finally been rewarded, the answers now mine – and from the unlikeliest of sources. Before I reveal these precious gems of knowledge, these nuggets of illumination, please allow me some exposition, without which I’m not sure the full magnitude of my discoveries can be appreciated.

I’ve always had a knack for attracting eccentrics into my life, a strange type of gravity that has kept my existence full of oddballs, characters, and cranks. They're almost always of the benign variety, unconventional creatures whose quirks have much more often been a source of delight than offense, whose idiosyncrasies have imbued my time on earth with welcome bursts of color and verve. Who needs normal? Normal is boring. Why just have a peanut butter sandwich when the addition of a few slices of banana can make all the difference between banal and splendiferous. So, bananas it is!

I suppose the roots of my appeal to those who are somewhat off kilter may lie in the fact that my family is chock full of endearing kooks of all varieties, from the full on nutso to those with quieter quirks. In my formative years I spent much of my time with an aunt who was practically a shut in, a woman who had retreated from the world at large and instead, with her vivid imagination, created one of her own; a realm full of magic incantations and mystical powers in which, it seemed to my young mind, absolutely anything was possible. In fact, I'm still half expecting the massive and all-powerful robot that she promised was going to be delivered decades ago to arrive at my door any day now. As my aunt would almost certainly say, "Malika Malika Woo, Make It Come True!".

My paternal grandfather was a gangster during prohibition, and my paternal grandmother a larger-than-life figure whose presence filled any room to bursting. She had a massive personality and could be wildly generous, wickedly narcissistic, wonderfully charming, and willfully infuriating all in the space of a single sentence. I adored her, though at times I wanted to run her over with my car. And this is just a tiny taste of the family milieu in which I grew up, a roiling jumble of the wacky, goofy, and kooky, an environment that left me with a high tolerance for eccentricity and quite comfortable with those who trickle just a bit wide – perhaps even more so than with those whose existence stays well within the lines.

With that bit of explanation out of the way, please allow me to introduce to you the woman who cuts my hair, Muntha, who is quite unique among New York City hairdressers. Back when I was healthy and working in the music industry, it was practically de rigueur for me to get my hair cut in one of the many trendy New York City hair salons, which all seemed staffed from stem to stern with the fashionable and fabulous. The women who styled my hair almost always had exotic Eastern European accents and legs that were longer than some of the compound sentences I’ve used in this essay.

I never felt comfortable surrounded by the fashionista hair styling brigades, and back then, when haircut time rolled around I’d often find myself filled with a combination of panic and dread. These feelings were only compounded when I got sick and started getting visibly disabled, as I could imagine myself limping through the salon door and setting off “imperfection” alarms, instantaneously followed by my getting zapped and vaporized by laser beams, just like those unfortunates who reached their 30th birthday in the movie Logan’s Run. The chic would then let out a little “huzzah”, congratulate each other on their wonderfulness, and soon get back to their snipping, teasing, and rinsing.

I found Muntha soon after I became wheelchair bound (I know, not a politically correct term, but I really don’t care). She works in a dowdy little beauty parlor in my neighborhood, which caters mostly to the elderly inhabitants of a 45-year-old condominium complex that is located across the street. Muntha is a Thai woman around 60 years old, a bit pear-shaped, maybe an inch or two over five feet tall, and she usually sports bright red or fuchsia hair. Around her neck she wears a half dozen or so gold plated pendants, all depicting the Buddha in various poses. She always has a huge smile on her face, and we’ve grown to share a genuine affection for each other.

Muntha practices her own peculiar form of evangelical Buddhism. The words “evangelical” and “Buddhism” are not usually used in combination, as practicing Buddhists are almost always profoundly serene souls, more inclined to inspire by example than by word. Not Muntha, though. During my haircuts she chatters endlessly about the Buddha, his teachings, and her fairly simple and slightly skewed take on the tenets of the religion.

She often tells me of her bus trips down to Atlantic City, where she plays the slots and feeds the feral cats that live underneath the boardwalk. I’ve seen her walking around the neighborhood spreading breadcrumbs and birdseed for the city's pigeons and squirrels. A belief in reincarnation is at the core of most forms of Buddhism, and Muntha is intent on insuring that her next life will be much more comfortable than the one she’s now living. Apparently, feeding critters and building up the good karma this engenders is key to her mission.

During Muntha’s haircut soliloquies she sometimes reveals insights she’s gained while meditating. Soon after Michael Jackson died, she quelled my anxieties and fears about how The King of Pop might be faring in the afterlife by spontaneously telling me that Jacko had found a spot in one of the higher levels of Buddhist heaven and was very comfortable indeed, resplendent in golden pajamas and eating all sorts of heavenly biscuits that were free for the taking. What a relief! I thought of querying her on whether the whole pedophilia thing might negatively impact his lot in life next time around, but then thought better of it. Muntha brings simplicity to the complexities of life, why throw a sticky wicket into the works?

And now, dear readers, I will finally reveal to you the how's and why's and where's of my illness, the metaphysical circumstances which not only led to my getting sick, but also to my wife being tasked with being my caregiver. During a recent meditation, Muntha was struck with the revelation that my current unfortunate circumstances were brought about because – brace yourself – in my most recent past life I was a raging alcoholic who was cruel to animals, and my wife Karen was the person who plied me with booze. Thus, our plight in this life is directly attributable to the misdeeds we committed in our previous incarnation, mine for hitting the sauce and then doing the same to our furry friends, and Karen for encouraging the thirst that made me misbehave so horribly. Makes perfect sense, no?

I’m planning on writing Muntha’s revelations up into a scholarly paper and submitting it to one of the prestigious medical journals, as this explanation for my illness makes at least as much sense as anything the neurologists have told me. My only quandary is whether I should share my Nobel Prize with Muntha. I suppose it’s only right that I do. Besides, if I don’t, in the next life I might be a leper.

At the end of every haircut, Muntha gives me a ritualistic Buddhist blessing of her own design, and I give her a tip for herself and also some money for the Buddha, which she donates at the Buddhist temple she attends. We always part by giving each other a sweet little peck on the cheek. Muntha assures me that in my next life I will be rich and strong as an ox, and that Karen will be there once again at my side, this time around living the good life. At least we have something to look forward to.

I hope this meandering tale has been of great value to my Wheelchair Kamikaze brethren. If any of you are right now guzzling malt liquor and getting ready to drop kick the family Pomeranian, for the sake of all that is holy –  stop and take heed ! The life you save may be your next one.

I’d just like to add that I am, in fact, a student of many Eastern philosophical/religious beliefs, and I don’t mean to denigrate in any way the tenets of Buddhist thought and practice. It’s just that Muntha and her antics tickle me to no end, and often provide comic relief just when it’s needed most. Thank heavens for people like Muntha, without whom this earth would be a very dreary place indeed.

Tuesday, April 4, 2017

Ocrevus: Former Genentech Researcher Speaks Out

First, let me preface this by saying that I am not anti-Ocrevus. As I’ve stated on these pages any number of times, it is my firmly held belief that MS patient advocates who are fervently “pro” or “anti“ any MS treatment, especially to the extent that they will disparage other treatment options, are doing a disservice to themselves and anybody who listens to them. The simple fact of the matter is that there is no perfect MS treatment; each and every one has its upsides and downsides and even these are mutable depending on the particulars of any individual patient. I’m all for any treatment that offers MS patients a chance to beat back their illness relatively safely and against supposed treatments that are either completely ineffective, dangerous, or blatant rip-offs.

It's my sincere hope that Ocrevus proves to be safe and even more effective than was shown in its clinical trials. Discretion is the better part of valor, though, and it's prudent to be wary of any drug new to the market. We've seen many drugs pulled after FDA approval because of unforeseen side effects, and have also seen other drugs that in time proved more successful than was initially expected. I've written extensively on the complicated history as well as the promise of Ocrevus, which you can read by (clicking here).

During my 14 years as an MS patient, I’ve learned to be highly critical of any medical news that I read or see in nonmedical newspapers or TV shows. These outlets generally overhype any treatment or medical discovery being discussed, and are often reported by journalists who don’t have the depth of background necessary to fully question the PR put out by the drug and medical device manufacturers. I’ve oftentimes wanted to throw things at my TV set when so-called experts state “facts” that are inaccurate, deceptive, and sometimes just flat out wrong.

The mainstream press has been heralding Ocrevus as a tremendous breakthrough, practically falling all over themselves with hyperbole in describing the revolutionary nature of this drug. The truth of the matter is that the real breakthrough came about a decade ago, when the much older drug Rituxan was first trialed on MS patients. The success of the Rituxan trials on relapsing MS shook the foundations of how multiple sclerosis was viewed by most researchers. Rituxan and Ocrevus both target immune system B cells; previous to the successful Rituxan trials, MS was generally thought to be mediated strictly by immune system T cells.

Ocrevus and Rituxan are made by the same drug company, Genentech. Even though the early-stage Rituxan relapsing MS trials were successful, Genentech chose to develop a newer molecule, now called Ocrevus, and abandon further research on Rituxan for MS. This despite the fact that Rituxan had a long record of relative safety in its original use treating non-Hodgkin’s lymphoma, and trials on Ocrevus would have to start from square one. The reasons behind this decision remain cloudy to this day, and include many that rely on absolutely legitimate scientific rationale. But, prominent among the reasons that must be considered is that Rituxan was due to come off patent in 2015, seriously limiting the profit potential of the drug.

On that note, today I came across a terrific article on the website Health News Review (click here). The piece discusses the pros and cons of the media’s coverage of Ocrevus, exploring issues such as the pharmaceutical company’s PR spin, the drug’s pricing, and the complexities surrounding its similarity to Rituxan. The article features MS neurologist and research scientist Dr. Annette M. Langer-Gould, a former employee of Genentech who worked on the development of Rituxan and Ocrevus. Her perspectives on these two drugs and on the introduction of Ocrevus are quite enlightening. Here’s an excerpt from the article, the whole of which you can and should read by (clicking here):

The Times and STAT’s piece on Ocrevus included statements from sources who hailed the drug approval, calling it a “big deal,” a “significant improvement,” “quite stunning,” and a “major therapeutic advance,” among other accolades.

But those compliments also could be applied to Rituxan, said Langer-Gould, who added that these “major therapeutic advances” actually happened more than a decade ago. But few benefited because Roche delayed Rituxan’s development and then eventually stopped it altogether. It’s misleading to paint Roche and its scientists as heroic now, she said.

“When they stopped Rituxan’s development, it was the main reason I left Genentech,” she said. “I told them ‘you’re just withholding a highly effective treatment for MS patients for another decade’–and that is exactly what happened.”

This article is so good that it speaks for itself, but I would like to add a few thoughts on a factor which hasn’t been much discussed in regards to the launch of Ocrevus. As we all should be aware by now, it’s common practice for drug companies to funnel payments directly to doctors who prescribe their drugs through the use of “consulting fees”, “honoraria, and other vehicles. According to the website Dollars For Docs (click here), Genentech, the maker of Ocrevus, leads the list of companies that engage in these practices, having doled out to doctors an eye-popping $727 million between August 2013 and December 2015. To put this in perspective, the next company on the list is on the hook for $167 million during the same period.

I’ve heard from several of my neurologist contacts that Genentech has been quite copious with its payments to MS doctors in advance of the Ocrevus launch. There is absolutely nothing illegal about this, and there is no saying how much such payments influence any individual doctor, but drug companies wouldn’t engage in these practices if they weren’t seeing a healthy return on investment. MS Neuros are among the largest recipients of pharmaceutical company monies, a fact that must be kept in mind by well-informed patients when discussing potential therapies. The Dollars for Docs website (click here) allows patients to search for any individual physician and see how much that doctor received from pharmaceutical companies during the time period mentioned above. I’d encourage all patients to take advantage of this resource by looking up their own physician to better inform themselves of what could be a motivating factor in their doctor’s decision-making practice.

If your doctor seems to have taken an inordinate amount of money from Big Pharma, don’t be shy about asking them the how’s and why’s of what you’ve learned. It’s your health that’s at stake here, and you have every right to ask as many questions as needed to make informed decisions on your course of treatment. If your doctor refuses to give you those answers, or answers in ways that leave you uncomfortable, I’d say it’s time to find a new doctor. Remember, your doctor works for you, you don’t work for your doctor.

Gee, I may just have lost a few of my neurologist friends…