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I usually start these Bits and Pieces posts with thoughts and/or observations that have been rattling around inside my brain pan for the last several days or weeks, but somehow as I sit down to write this I’m experiencing nary a rattle. Truth be told I've been struggling with some writers block these last few weeks, pretty much for the first time since I started writing this blog over five years ago. I suppose it might only be expected after all of these posts, but geez, writer’s block sucks.
I suppose I could jabber on about how disappointed I am in the Boston Red Sox the season, or how much I’m looking forward to the new season of fantastic zombie TV show The Walking Dead (which doesn’t start until October, ugh), or how bummed I am that I missed seeing the new Godzilla movie in 3-D at the IMAX theater which is one block away from my apartment. Can you believe it? I LOVE Godzilla, and I missed the chance to see the beast from the deep in three dimensions on a screen 30 feet tall! How could I be so stupid?
Now, I don’t expect the new Godzilla movie to be anywhere near as good as the original 1954 Godzilla, and by original I mean the Japanese version, not the Americanized one that intercut scenes of Raymond Burr playing an American reporter in Tokyo during Godzilla’s onslaught into the sublime Japanese film, which is actually very introspective (well, as introspective as a movie about a prehistoric beast eating Tokyo can be), filled with nuanced references to Japan’s national angst about World War II, the horrors of atomic warfare, and the potential dangers of science run amok.
Speaking of Raymond Burr, did you know that he once owned his own private island in Fiji? I knew he was a successful actor who starred in some very popular TV series (Perry Mason, Ironsides) and had a very clandestine private life, but go know he had enough money to buy a private island. I sure would like a private island, although these days I guess a private island wouldn’t be much use to me, given my heat sensitivity issues and the fact that I don’t think sand and my wheelchair would get along very well. God, I hate having MS.
Okay, I guess that’s enough writing about nothing, so I might as well get to my latest collection of MS news items and other bits of info that have caught my attention and/or fancy over the past month or so. Hope you find them interesting, informative, entertaining, and worthwhile…
♦ The oral MS drug Tecfidera has been on the market here in the US for a little bit over a year, and a new study provides encouraging news about Tecfidera’s efficacy, while another furnishes some disconcerting data regarding the drug’s side effects. A paper released just this week demonstrates that Tecfidera is remarkably effective on newly diagnosed RRMS patients who have not previously been on other MS drugs (click here). Patients in the study took the drug either two or three times a day, and researchers found that Tecfidera reduced relapse rates by 56% and 60% in these groups, reduced the risk of relapse by 54% and 57%, reduced the number of new or enlarging lesions by 80% and 81%, and reduced Gadolinium enhancing lesions by 92%, when compared to patients taking a placebo. These numbers place Tecfidera amongst the most effective MS drugs available. No word yet on the effectiveness of the drug on patients who have had the disease for a longer duration, or who have already been on other treatments, but one would imagine that similar rates of effectiveness should be expected.
On the downside, another study looking at Tecfidera’s side effects found that gastrointestinal problems and flushing were reported by large numbers of patients taking the drug (click here). Although more serious side effects (such as opportunistic infections) were not reported, researchers found that gastrointestinal problems were severe enough to force roughly 10%-25 % of Tecfidera patients to stop taking the drug, depending on the MS clinic providing the data. Over 50% of Tecfidera patients required some kind of over-the-counter medications to help combat the initial side effects of taking the drug, although the majority of patients noted that these side effects subsided within three months of starting the drug. Seems that similar percentages of patients (10%-25%) experienced few if any side effects, and physicians are trying to find ways to ameliorate the incidence of side effects in their Tecfidera patients.
So, definitely a mixed bag on the Tecfidera front. Highly effective on the one hand, problematic side effects on the other (although no deadly side effects so far, thank heavens). As with all things MS, it seems it’s never easy…
♦ On one of the Internet MS forums I occasionally visit, a member was worried that they might be “cracking up” because they found themselves laughing or crying – sometimes uncontrollably – at the drop of a hat, and often at inappropriate moments. A little light bulb went off in my head (yes, I have light bulbs in my head, and they’re all of the old-fashioned incandescent variety) and I remembered a little known and talked about MS symptom called the pseudobulbar affect (click here). PBA, as it is called, is a symptom seen across a wide variety of disorders of the central nervous system which makes those afflicted with it highly prone to laughing and/or crying fits, usually completely beyond their control.
As might be expected, pseudobulbar affect can be very disturbing to those MS patients who suffer from it, especially if they don’t know that their out of whack emotions might be a symptom of their disease. A recent study found that about 10% of people with MS suffer from PBA (click here), so it’s more common than might be expected. Here is a little online quiz to check if you might have PBA (click here), thoughtfully provided by the drug company that (surprise!) makes a pill to combat it. Yes, there’s a pill for that! It’s called Nuedexta (click here). Now, this is just a guess, but I bet the pill is obscenely expensive. Hey, I just did a little googling (honestly, I did) and found that Nuedexta costs a mere $600 a month. Yikes! Yes, the price of MS meds forces one to laugh to keep from crying, and that has nothing to do with pseudobulbar affect.
♦ Speaking of the high price of MS drugs, five multiple sclerosis medications landed on a list of the 73 drugs whose prices have increased the most since 2007 (click here). Since that time, the price of Copaxone as increased 157%, Rebif 154%, Avonex 147%, Betaseron 133%, and Tysabri 102%. Given the fact that the first four of these drugs (the CRAB drugs) are the oldest MS “disease modifying therapies” and have been on the market for at least 15 years, one would expect their price to have decreased with time rather than increase. Apparently, though, logic plays no role when it comes to pricing MS drugs (and most other drugs, for that matter), as drug companies try to squeeze as much profit as possible out of their older drugs before patents expire and generic alternatives become available. Can’t say this isn’t a winning strategy for the drug companies, since Copaxone generated $4,000,000,000 (!) in sales last year and was the highest grossing MS drug on the market. Is it any wonder that more progress towards finding a cure hasn’t been made when huge gobs of money are being pocketed by keeping MS patients dependent on drugs that only “modify” the disease and most medical research is funded by the companies pocketing those gobs of money? An old saying about geese and golden eggs springs to mind.
♦ Okay, enough about drugs and drug companies, let’s move on to other vistas. How about some underwater ones? In this video (part of the terrific TED Talks series), artist Sue Austin takes my Wheelchair Kamikaze concept to new heights, or, more correctly, depths. After an extended illness left her disabled, Ms. Austin found the world shrinking, a feeling many of those with MS know all too well. As she eloquently expresses in the below video, before getting her wheelchair and exploring all of the potential it presented, she had internalized the limitations and dependencies that society seems subconsciously to want to impose on the disabled. When she got her powerchair, though, her world and all the possibilities contained within it suddenly burst wide open. The chair allowed her to explore unexpected directions in her visual artwork, and ultimately led her to take this new mode of creative expression under the sea. Yes, Sue Austin scuba dives in her wheelchair, and with style. Incredible, beautiful, and inspirational…
♦ The folks at the Made Strong company (click here) offer T-shirts and other items bearing their “Made Strong” credo, and they donate 10% of their profits to worthy causes (for MS, these monies go to the Race to Erase MS). I’m typically turned off by feel-good slogans and platitudes, especially when they have to do with the disease that has taken a wrecking ball to my life. The phrase “I Have MS but MS Doesn’t Have Me” makes me want to poke my eyeballs out with red-hot knitting needles. But there’s something about “Made Strong” that strikes a chord. There’s very little good I care to say about multiple sclerosis, but I do have to admit that struggling with MS and all the BS that goes along with it has made me a mentally stronger person even as the disease has whacked away at my physical self. I’m no longer the neurotic, anxiety riddled person that I used to be back in my healthy days. Dealing with this illness has led me to me confront some of my darkest fears and even my own mortality, forcing to the surface a mettle I honestly didn’t know I possessed. So, yeah, Made Strong, an MS slogan I can live with. The Made Strong people have generously offered a 10% discount to Wheelchair Kamikaze readers. Just use the promo code WCK10 when ordering. (Full disclosure: Made Strong sent me a free T-shirt to introduce me to their products. Does this make me guilty of accepting a bribe? Maybe, but I promise that I wouldn’t have given them a word on this blog if I didn’t appreciate the sentiment expressed on their goods. I guess everybody has their price, but I’d hate to think that mine is as cheap as a T-shirt. Note to other product manufacturers: sending me free stuff will NOT guarantee you a place on these pages, but, on the offhand chance you’re interested, I do like cameras, vintage NYC World's Fair memorabilia, and exotic chocolates. Also, I really enjoy giving my wife jewelry, so diamonds 1.5 carats or larger set in white gold or platinum might get you a Wheelchair Kamikaze shout out. Just saying.)
♦ Okay, time for another installment of… asinine research (the crowd roars)! I’ve come across yet another study having to do with MS patients falling down (click here). What is it about multiple sclerosis and falling down that so fascinates researchers around the world? Seems to me that the two go hand-in-hand, MS and falling down, sex and pregnancy, beans and cornbread. This has to be the third or fourth “falling down” study I’ve featured here on WK, and I’ve passed up a few along the way.
Okay, so, this study compiled the results of a bunch of different studies from Australia, Sweden, United Kingdom, and the United States. Wait a minute, that’s three English-speaking countries out of four, and I’m pretty sure a lot of Swedish people speak pretty good English, so this immediately casts doubts on the validity of these results. Dammit, this study is biased against non-English-speaking multiple sclerosis patients who fall down! What, falling down in other languages doesn’t count? Don’t we all say “ow” when we fall down, no matter what our native tongue? If you prick us, do we not bleed? Must we constantly erect artificial barriers that keep us from seeing ourselves as one big family of man, instead giving way to tribalism and divisiveness, even when researching as eternally perplexing a subject as whether or not people with a potentially crippling disease fall down? Oh, the humanity!
Despite its jingoistic tendencies, this falling study does break some new ground (pun intended) as it defines MS patients who fall down as either “fallers” (those who fell only once during a during a three-month span) or “frequent fallers” (those who fell twice or more during the three-month span). My question is, do frequent fallers get some kind of gifts or rewards, like frequent flyers? Do they have exclusive access to luxurious waiting areas in their neurologists’ offices, replete with thickly padded floors and walls, where their every whim will be catered to as they tumble and crash to the ground? I mean, what good is it to qualify as a “frequent faller” if you can’t rack up those frequent faller points? Does accumulating enough frequent faller points allow for some kind of upgrade, like maybe to a neurologist who actually gives a shit? Of course, this study does nothing to address these issues. Stupid researchers.
What this study does reveal is shocking, simply shocking! “Most falls occur indoors (65%) between 6 AM and 6 PM (75%).” Gee, that couldn’t be because most MSers with mobility issues tend to spend a lot of time indoors, and – I’m guessing here, probably need to research this more fully – most falls don’t happen while sleeping, could it? “Primary progressive MS was associated with significantly increased odds of being a faller.” Who would’ve thought, given the fact that the most common first presenting symptom of PPMS is gait disturbances, that this form of the disease would lend itself to going kerplop? “Fall risk peaked at EDSS levels of 4.0 and 6.0…” Hmmm, EDSS 4.0 is defined as “fully ambulatory… despite relatively severe disability” and EDSS 6.0 calls for “intermittent or constant assistance (cane, crutch, or brace) required to walk about 325 feet”, so this study finds that patients whose disease has progressed far enough to produce “relatively severe disability” but not far enough to put them in a wheelchair face the greatest danger of taking a dive. Is Captain Obvious one of the authors of this paper? For their next research project, I suggest the authors study whether or not hitting yourself hard on the head with a hammer can cause a concussion. Hopefully by testing the hypothesis on themselves.
Seriously, though, the issue of PwMS suffering numerous falls is no joking matter, as I’ve known several folks who have really hurt themselves after taking a tumble. Here’s a page (click here) with some common sense tips on things that can be done to help prevent falls whether or not you have MS. And for all my MS friends out there, I think my best advice is to just use your head, and not as landing gear. I know we can all be very obstinate and loath to “give in” to the disease, but a broken hip or gashed forehead is too high a price to pay for pride. If you need help, ask for it. If doing something that used to be easy has become nearly impossible, just don’t do it, at least not without assistance. Easier said than done, I know, but MS can do enough damage without your giving it a helping hand.
♦ In my last “Bits and Pieces” post I concluded with a video by the musical artist Paolo Nutini, one of the musicians who are part of the neo-soul/retro-soul movement, making music that hearkens back to the funky, soulful sounds of the 1960s and 70s. Lots of readers commented on how much they enjoyed the video, and since I’m absolutely addicted to the stuff, I figured I’d make examples of the genre a regular part of these little compilations. So, feast your ears on Mr. Charles Bradley, who pours his guts out on every track he records. Part of the Daptone Records stable of artists, Charles Bradley may be considered a new artist, but he’s no young pup. He recorded his first album at the age of 62 in 2011, backed by the relentlessly funky Manahan Street Band. Mr. Bradley has lived a life filled with hardship and heartache, and his musical emergence is so unlikely that it’s almost impossible to believe. It’s captured in a terrific documentary called “Charles Bradley: Soul of America” (click here), which can be viewed on Amazon Prime streaming video. Throughout a lifetime spent living a hardscrabble existence, at times practically homeless, Bradley picked up gigs as a James Brown impersonator, an influence unmistakable in his recorded output.
So, without further fanfare, here is the righteous, mighteous, and out of sighteous Charles Bradley…
