Monday, June 17, 2013

Bits and Pieces: Long Time, No See Edition

Zombie High
Well, it’s time once again for another Bits and Pieces post, featuring a collection of MS related news items that have made their way from my eyeballs to my brain pan over the last couple of months. It’s been a while since I’ve done a Bits and Pieces post, the reason for which I can’t really think of at the moment. As some long time readers have noticed, I’m not posting quite as frequently as I used to, but have no fears, my disease hasn’t taken a dramatic turn for the worse, nor have I fallen off the face of the earth.

Isn’t that a stupid expression, “fallen off the face of the earth”? I’m pretty sure nothing has ever fallen off the face of the earth, as leaving the face of the earth for even a split second takes a fair bit of exertion, requiring the likes of jumping, skipping, hopping, or some other form of vertical derring-do. These days, given the effects of my creeping paralysis, I’m far more likely to be partaking in some derring-don’t than derring-do. MS turns derring-do into derring-doo-doo. Aren’t you glad that the disease hasn’t affected my level of maturity. You’re only young once, but you can be immature for the rest of your life…

Sure, the disease continues to do its demented dance, the crippled fandango, and these days I’m more inclined to go for quality over quantity when it comes to most things. Except, of course, zombie movies. After doing some extensive privately funded research, I’ve discovered that sometimes “bad” zombie movies can be more enjoyable than “good” zombie movies, a realization that has thrown my entire concept of “bad” and good” into crisis. Quite the philosophical quandary, and one that might only be resolved by watching more zombie movies.

I know, many of you are suddenly thinking “Damn it, Wheelchair Kamikaze, now I have a yen to watch a zombie movie, and I have no way of knowing what zombie movies get the Wheelchair Kamikaze stamp of approval!” Have no fear, I couldn’t in good conscience leave you jonesing for a zombie flick without making a recommendation, so here’s a good one: Dead Snow (click here), a Norwegian take on the genre, in which some snow sport loving Norwegian students face off against a regiment of long dead Nazi SS soldiers over a lost hoard of World War II gold. What’s not to like?

Okay, when I started writing this I had no idea I’d veer off into zombie territory, which on its face would seem to have nothing to do with MS. But MS, with its delightful potpourri of spasticity, paralysis, and brain fog, can certainly make one feel like a zombie, and on more than a few days I’m pretty sure the average zombie could beat me in a race to get a physical copy of and then complete the New York Times crossword puzzle. Hey, now there’s an idea for a screenplay, a zombie movie of my very own! Somebody get me in touch with Spielberg, this idea has “green light” written all over it. We can call it Dead Tired.

Okay, with visions of zombies playing word games dancing in your head, I present my latest collection of MS news and notions…

♦ Let’s start with some of the latest news in the world of MS drugs. There is an increasing awareness among MS researchers and clinicians that early treatment is very important in potentially lessening the severity of a patient’s multiple sclerosis (click here). Researchers now talk of a “window of opportunity”, early on in the relapsing remitting disease process, when treatment can make a big difference in the aggressiveness and destructiveness of the disease. Recent advances in MRI imaging, along with physical studies of MS brains (through biopsy or postmortem examination) have revealed that neurons suffer damage far earlier in the disease process than was previously thought. Once neurons are damaged, they stay damaged, so early intervention to minimize that damage may prove to be vital. There is quite a lot of disparaging of the available MS treatments on MS Internet forums and Facebook pages, much of it deserved, but there is some compelling science to back the notion of early treatment, such as this study (click here) which showed a significant impact on mortality rates between treated and untreated patients over the long term (21 years). In other words, this retrospective study found that patients treated with interferon lived longer than untreated patients, a result which cuts right to the bottom line, don’t you think?

Lost in all the hubbub over the introduction of Tecfidera was MS drug giant Biogen’s application for FDA approval for its new interferon drug Plegridy (click here), which is basically a reworked version of Avonex that would require patients to inject themselves only once every two weeks. Trials showed its effectiveness in reducing relapse rates and enhancing lesions to be in line with those of the other interferon drugs (Betaseron, Avonex, and Rebif). The interferon drugs don’t benefit all RRMS patients (approximately 1/3 of patients respond to interferon treatment), come with their own drawbacks (flulike symptoms), and there is ongoing debate whether they impede disease progression, but if you feel that they do work for you and you’re not inclined to rock the boat, then, once approved, Plegridy might allow you to cut down on the number of injections you have to give yourself without switching to an entirely new class of drug.

On the always interesting (to put it mildly) Tysabri front, the good folks at the Multiple Sclerosis Research blog (click here), which is compiled by some world-class MS researchers in London, have put together an easy to understand slideshow explaining the latest on Tysabri’s effectiveness, and the risk of PML for different subsets of patients (click here). If you are currently on the drug, or considering going on it, this is really must-read information. In a nutshell, it reveals that one in three Tysabri patients appear to be free of MS disease activity (that’s the good news), but that the PML rate is as high as 1 in 94 for JC positive patients who had previously been on immunosuppressive therapies and have been on Tysabri for more than two years (that’s the bad news). In related news, a just-released study raises concerns that the blood test given to Tysabri patients to determine whether or not they are JC virus positive may result in a high number of false negatives (click here). The JC virus is the bug that causes PML, and the risk of developing PML while on Tysabri for JC negative patients is almost nonexistent, but increases exponentially for patients who test JC positive. Therefore, the accuracy of the test for JC virus is imperative for correctly assessing the PML risk of individual patients. Let’s hope the scientists get their shit together on this one, and soon.

♦ The nation of Iran seems to be experiencing an epidemic of multiple sclerosis, the rate of those affected with the disease increasing almost sevenfold between 1989 and 2005 (click here). If the disease continues its rapid spread, one source estimates that in 10 years every Iranian family will have one member suffering from multiple sclerosis (click here). The cause of this dramatic spike in MS cases is a mystery. One theory is that since the country’s Islamic Revolution in 1979, adherence to strict Islamic law has mandated that women cover their heads and bodies, limiting their exposure to sunlight and thus lowering their levels of vitamin D. Low levels of vitamin D are increasingly being linked to MS, so this theory may have some merit. However, other countries that have no such clothing mandates, such as southern Italy, Norway, and Japan are also experiencing marked increases in MS, and we are also seeing alarmingly high rates of MS and other neurologic diseases in US military personnel returning from the Middle East. Likely, a mix of environmental factors is at work.

Iranian researchers are setting their sights on MS, and one study of 400 patients revealed that smoking increases the risk of RRMS transitioning to SPMS (click here). Yet another reason to stop smoking, if you already haven’t. As a former smoker, I know how difficult it can be to give up the coffin nails, as I used to love the damned things. But MS and smoking definitely don’t mix, and besides, current laws and restrictions have made smoking a tremendous pain in the ass. Here in NYC, smoking is banned in most buildings and all bars and restaurants, and even in Central Park. The 49 story high-rise building I live in is a non-smoking zone. To top it all off, in New York cigarettes cost more than seven dollars a pack, so if they don’t kill you they’ll soon force you into bankruptcy. Really though, was there ever a more delectable pleasure than sitting in a bar with friends, getting sloshed while smoking your brains out? Those were the days my friend, we thought they'd never end, but then everyone got cancer, emphysema, and multiple sclerosis.

According to a newspaper in Azerbaijan, Iranian scientists hard at work on the MS problem have come up with a cure, called (I kid you not) MS Nut (click here), “an herbal substance that can completely cure multiple sclerosis”. Color me skeptical. Also color me jealous, because I always thought of myself as the “MS Nut”, and now the Iranians have stolen the moniker of my alter ego. Crap.

♦ Speaking of MS nuts, a Texas photographer discovered a collection of preserved human brains at the University of Texas at Austin, taken from patients who died at the former Texas State Lunatic Asylum between the 1950s and the 1980s (click here). Labels on the jars revealed some of the conditions for which the brains’ former owners had been committed to the asylum, among which were Lou Gehrig’s disease and, you guessed it, multiple sclerosis. At least we can be thankful that they’re no longer locking up MS patients in lunatic asylums, but I’m not taking any chances. If I see any sinister looking men in white coats heading my way, I’ll be Wheelchair Kamikazeing it right the hell out of there…

♦ And now for one of my favorite topics, adventures in asinine MS research. One such study, evaluating the risk factors contributing to falls in PwMS, followed 148 patients who had mobility issues but were still ambulatory (EDSS 3.5-6.5) over a three-month period (click here). The findings? “Continence issues, previous falls history and use of prescribed medications were each associated with increased risk of being a "faller". Holy moly, this changes everything! You mean people afflicted with a crippling illness who have serious mobility issues, have taken a few tumbles in the past, ingest copious amounts of prescription drugs that can cause extreme fatigue and balance issues, and at times suddenly find themselves about to crap and/or piss in their pants might be at risk of face planting as they desperately struggle to make their way to a toilet? I’m shocked!

I propose that as a reward for this massive contribution to science, the investigators involved in this study be forced to experience some of what their research subjects go through on a daily basis. Let’s gather our esteemed researchers in a room at least 50 yards from the nearest lavatory, attach lead weights to their legs, tie their shoelaces together, and make them each drink a gallon of water as they swallow large handfuls of laxatives. As soon as our scientists turned research subjects start feeling the need to “go”, we’ll smack them in their heads with a medium-size frying pan to simulate the effects of an MS pharmaceutical cocktail. I’m no expert, but I predict we might just witness a few falls, along with some other, er, less pleasant phenomena. I’m positive a Nobel Prize awaits…

♦ Okay, now that we’ve got science is out of the way, let’s turn to the arts. Artist Veronica Wilson, who works in glass, has been an email friend of mine for a few years now. In addition to writing very entertaining emails, Veronica creates fabulous stained-glass art pieces even as multiple sclerosis puts a crimp in her mobility and now impacts the use of her hands. Veronica is a member of the Frog Valley Artisans (click here), and lives and works in Berkeley Springs, West Virginia. Here’s a very nicely done short video profile of Veronica and her work…

Well, that’s it for this edition of Bits and Pieces. I have some zombie friends waiting for me on my DVR…

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Monday, June 3, 2013

Conquering Fears Through Photography

English: A photo of a Voigtlander Vito II came...

Well, it’s two weeks short of a year since I last posted new photos to the Wheelchair Kamikaze photo gallery. A long time between photo posts, so long, in fact, that relatively new readers might not even be aware of the specifics behind the WK photo gallery. For those who don’t know the photo gallery “back story”, here's a quick summation.

Back in my healthy days I was an avid amateur photographer, always snapping away with a variety of cameras. When I got sick my right side quickly weakened, making shooting photographs (along with a whole bunch of other things) increasingly difficult. I tried to keep at it, but within a few years, much to my great frustration, I was forced to set my cameras aside as shooting with them simply became too difficult, and quite frankly I didn’t have the stomach to come up with workarounds.

Several years passed with my never touching a camera, though I missed photography intensely, until my creeping paralysis crept to the point that my mobility needs required the assistance of a mechanical monster, my wheelchair. Once the beast became part of the family, my wife started bugging me to figure out a way to attach a camera to the thing, so that I could use my good hand to make photographs using a wheelchair mounted camera. Being an obstinate putz I steadfastly resisted her suggestions, although she did manage to wheedle out of me some ideas of how I might go about setting up such a rig. My wife's Christmas present to me that year was, as you might’ve guessed, all the components needed to make a wheelchair mounted camera a reality: a new digital camera with a flip out viewing screen and a little tripod with flexible legs that I could wrap securely around the arm of the wheelchair (to see the setup, click here. Though the gear has changed in the intervening years, the basic setup remains the same.)

Soon enough I was back in business, zooming around the city (mostly Central Park), a half paralyzed shutterbug on wheels. The resulting photos turned out surprisingly well, and in addition to shooting stills I also made some videos. Thus, the Wheelchair Kamikaze blog was born, more a place to showcase my photos and videos than the repository of written rants and raves that it has evolved into over the years.

So, why haven’t I posted any new photos in almost a year? The short answer is that I haven’t been doing much in the photographic department these last 12 months. The longer answer is that I haven't been doing much in the photographic department these last 12 months because my disease has continued to progress (as progressive diseases are wont to do), and my “good” left side is no longer so terrific, forcing me to question whether I could still manage certain activities that I had previously taken for granted.

For the first eight or so years after my diagnosis, my left side really wasn’t effected by the disease all that much, but the last year and a half or so have seen it noticeably and increasingly diminished. As it is with all of the insults dished out by the disease, the physical impacts of these new challenges have been accompanied by psychological hurdles as well. If I’m honest with myself the truth is that I haven’t shot any photos, or even processed a bunch that I shot last summer, because I was afraid to find out that I could no longer do so. Manipulating the wheelchair mounted camera takes a good bit of fiddling with dials and buttons and such, and processing photos through Photoshop, even for the minimal amount of image enhancements that I usually do, requires a fair amount of precise mouse work. Rather than try and fail, and then have to deal with the wreckage of that unpleasant new reality, I semi-consciously decided to not try at all, and thus avoid the situation altogether. In short, fear of failure took the wind out of my photographic sails, compounding the physical limitations imposed by the disease with some of my own making.

Lately, though, I’ve been feeling that old familiar yen, at least in part spurred on by the nicer weather as winter turned to spring. I’ve also grown more resigned to the fact that my left side is getting increasingly wonky, and sick of capitulating to the fear that I might no longer be able to do something (photography) that is so tied into my sense of self. The disease is crippling enough, and I resolved that I wouldn’t allow my fears to cripple me further. So, I grudgingly opened up Photoshop and started working on some of the photos that had been occupying my hard drive untouched for the last year or so.

Lo and behold, I found that I can still put Photoshop through its paces, certainly not as quickly and efficiently as before, and only for a couple of hours at a time before my hand becomes unresponsive enough to start freaking me out, but, dammit, once I shook the rust off the results weren’t all that bad. Spurred on by this minor triumph, I bit the bullet and took the camera on a couple of sojourns to Central Park, where I discovered that I can still manage the required twisting and pushing of camera and lens controls. Not for the unlimited hours upon hours as I had in the past, but I was able to shoot almost nonstop for about two hours, long enough to make it a very pleasant and productive afternoon. Sure, my arm and hand felt made of flimsy rubber bands on the way home, but the victorious feeling I felt more than made up for the increased danger I was to pedestrians, since my ability to manipulate the wheelchair joystick was noticeably diminished. I managed to make it home without taking out anybody’s shins or kneecaps, and not only had I been able to take some pretty good photos, but I’d stood up to a big fear and kicked it in the nuts.

So, I now know that I can still shoot photos and run them through Photoshop, at least for today and tomorrow, and for fuck knows how much longer. I’ll just have to take it as it comes. I’ve got some “outside the box” treatment options yet to try, some of which I’ve already written about on this blog. Given the state of the world, with lunatics shooting up parades, movie theaters, and grammar schools, with weather patterns seemingly more severe and deadly by the week, and with a geopolitical landscape that appears increasingly on the brink of widespread violent chaos, it could be that MS is the least of my worries. As somebody much wiser than I once said, “life is uncertain, eat dessert first.”

With that, I present to you my latest batch of photos, long overdue. About half were taken recently, but all have been processed within the last month or so. Most were taken with my wheelchair mounted camera, but a few were shot with an iPhone with a close-up lens attached, including the photos of the dragonfly and the ant in the flower. Though it’s a little tricky, I can handle the iPhone camera with my one clumsy hand, and I’m always surprised at the capabilities of that little device.

I’d welcome all feedback on the photos, positive and negative. Which ones do you like, and which ones suck? Please don’t hold back because of my “conquering fear” thing. Negative feedback is just as helpful as positive, maybe more so. Your honesty will be much appreciated…

Click on the thumbnail image for a larger version.

 photo Asian-musician-color-final.jpg  photo Mickey-Ds.jpg  photo garbage-Lady-3.jpg  photo Squirrel.jpg
 photo violin-1.jpg  photo umbrella-man.jpg  photo dragonfly-2.jpg  photo wistful-liberty-BW.jpg
 photo Egret-large-BW-final-1.jpg  photo hat-lady.jpg  photo better-looking.jpg  photo Tough-Bird.jpg
 photo Rose-macro-2.jpg  photo posters-HDR-copy.jpg  photo trumpet.jpg  photo white-and-pink.jpg
 photo linc-cent-dark-comp_HDR.jpg  photo Marilyn.jpg  photo but-first.jpg  photo text-guy.jpg
 photo ant-and-flower.jpg  photo dangling-copy.jpg  photo another-dandy.jpg  photo yellow-flower.jpg

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