Tuesday, December 15, 2015

Creeping Paralysis

Back before the words Multiple Sclerosis entered the general lexicon, the disease, especially in its progressive forms, was commonly called Creeping Paralysis. A quick Internet search through the archives of the New York Times reveals the term being used on quite a few occasions dating back to the 1870s (when the archived materials begin), most often and quite disconcertingly within the text of an obituary. A typical example is the 1886 obit of a Mr. Benjamin Moran, an American diplomat stationed in London who was apparently quite the bon vivant, a “great society haunter” who was “smart, lively, and amusing” (click here to download a PDF of the obituary). As described in Mr. Moran’s written memorial, “For the last few years he was a dreadful sufferer of Creeping Paralysis, which rendered him completely helpless…”. Sigh.

Of course, we can’t be sure that Benjamin Moran suffered from Multiple Sclerosis, as Creeping Paralysis is an apt label for any number of similar maladies, such as ALS (Lou Gehrig’s disease), or advanced spinal stenosis. Still, Creeping Paralysis is a terrific descriptor of the effects of Progressive MS, so much so that I’ve often used the phrase here on these pages, and I’ve considered wielding it as an answer when people wonder out loud just why my backside is stuck in a wheelchair. “Creeping Paralysis” would certainly quench their curiosity more effectively, I would think, than the clunky and hard to decipher answer that I currently employ, “Progressive Multiple Sclerosis”. There is much confusion about just what the hell Progressive Multiple Sclerosis is, even among people with Multiple Sclerosis. Progressive Multiple Sclerosis sounds like some kind of politically left leaning version of the disease, whereby Creeping Paralysis sums up the disease and its perils in two easy to understand words, very clear and concise. “I have Creeping Paralysis”. Conversation over.

Unlike Relapsing Remitting MS, whose torments come in the form of acute attacks that eventually recede, sometimes leaving residual symptoms in their wake, Progressive MS is the gift that keeps on giving, inflicting a slow, steady decline in function leading to ever increasing disability over time. In other words, Creeping Paralysis. Mine first crept up in 2003 as a slight buckling of my right knee that only surfaced after I had walked several miles. I’d experienced any number of weird symptoms for years before, but it was the knee that finally sent me to the doctor. Over the next weeks and months, that initial problem spread to ever-increasing weakness invading my entire right side, insidiously creeping through my right leg, arm, and hand. Three years post diagnosis I needed an ankle brace to keep my right foot from dragging along the ground when I walked, year four saw me using a cane, and in 2008, five years after I’d been slapped with the MS label, my Creeping Paralysis had done enough damage to insist that I use a mechanical throne for ambulation.

Creeping Paralysis treats each of those it abuses differently. I know some folks who have had the disease for decades and are still walking, while others find themselves bedridden within 10 years, sometimes sooner. Generally, the disease treats women more gently than men, although, unlike Relapsing Remitting MS, which victimizes women far more often than men, Progressive MS attacks men and women in equal numbers. While there are currently about a dozen approved treatments (however imperfect they may be) that can help keep the worst ravages of Relapsing Remitting MS at bay, at present there are no treatments that have proven to be effective in even slowing down Progressive MS for the vast majority of the people it attacks.

During my first five years with the disease, the paralysis I experienced felt less like it was creeping and more like it was blitzing through my body like the Nazi armies crashing through Belgium on their way to overtaking a completely underprepared, overwhelmed, and horrified France. Five years may sound like a long time, but when those years see you diminished from fully functional to wheelchair reliant and from working to “on disability” they seem like the blink of an eye.

For many years my Creeping Paralysis was confined almost exclusively to my right side, leaving my left largely untouched, allowing me the hope that this would continue to remain the case and that I’d retain a fully functional left arm and leg, a situation I wasn’t happy about but with which I could make do. ‘Twas not to be, however, as whatever obstacles had kept the creeping temporarily restrained to one hemisphere of my body fell by the wayside, and for the last several years the paralysis has assaulted my right side as well, increasingly taking hold. Despite all efforts – and the list of those efforts is incredibly long and varied – my Creeping Paralysis has yet to meet its Waterloo (yeah, yeah, I know I’m mixing up my military metaphors, so sue me).

Increasingly, I’m finding that Creeping Paralysis is impacting not only my body, but my mind and spirit as well. As the disease has become more and more entrenched, and my body less and less able, I suppose it’s inevitable that the condition takes a psychological toll. I’ve learned that paralysis can extend beyond the physical realm. The bodily restrictions imposed by the disease are increasingly accompanied by a psychological reticence to test the boundaries defined by those restrictions; it’s far easier and much less disheartening to curtail activities that once gave me pleasure rather than find out for sure that I can no longer do them. Thus my old hobbies of shooting videos and taking photos from a camera mounted on my wheelchair have fallen by the wayside, my camera equipment gathering dust for the last 18 months or so, it too victimized by my Creeping Paralysis. The ever less dexterous fingers on my one working hand can’t properly control my camera and lenses, and my last attempts at photography proved to be nothing but exercises in frustration.

When simply getting dressed pushes the limits of what is physically possible, the prospect of committing to social activities becomes daunting. Healthy folks seem to have a hard time understanding this. After all, just a few years ago I was out in my wheelchair meeting them for lunch on a regular basis. Thus, despite my best intentions, Creeping Paralysis has frozen not only some of my body parts but some of my relationships as well. I can’t blame friends and family for drifting away in the wake of unreturned phone calls and unanswered emails, but I try not to blame myself, either. In addition to Creeping Paralysis, I have also to deal with widespread endocrine dysfunction and a hideously painful degenerative bone condition, and at times even when there is a willingness to interact, the effort required for lively conversation or the composition of a lucid note can be simply too much to muster. Creeping Paralysis seems to rejoice in imposing limitations on all aspects of life.

There’s a fine line between capitulating to the disease and adjusting to its ever-changing realities. I have found the that less I am able to do the less I am interested in doing. Being out and about in the healthy world, among all of the obliviously fortunate people whose limbs perform seemingly miraculous feats without any apparent effort – like walking or using a knife and fork – can offer much-needed distraction, but can also place a laserlike focus on all that I’ve lost, almost mocking me for those losses. Even watching television can become a seriocomic affair, as commercial after commercial advertises products that are no longer of any use to me, hawking them to a population of which I am no longer part. Cars, exercise machines, the latest electronic wonders, items that in some long-ago life might’ve piqued my intense interest now serve only to illuminate the ugly metamorphosis I'm experiencing courtesy Creeping Paralysis.

Despite the at times dour tenor of this essay, please know that through it all I still laugh far more than I cry, still strive to find nuggets of joy wherever I can, even if I have to dig through piles of manure to get at them. I’m fighting the many components of my disease as hard if not harder than ever. Earlier today my wife and I chuckled as we marveled over the fact that I’m taking medicines in pretty much every way they can be taken. I’m inhaling aerosolized antifungal medication to treat a potential mold infection in my sinuses; getting injections of testosterone as part of my fight against my endocrine issues, ingesting antimicrobial drops and liquid probiotic cocktails in an effort to rebalance my gut Microbiome, getting an intravenous treatment called plasmapheresis in an attempt to beat back the Creeping Paralysis, and taking pills by the dozen. We concluded that the only mode of drug delivery I’ve missed is anal suppository. I’ll have to get hard at work on that one. Not.

So there you have it, Creeping Paralysis and my experiences with it. Hopefully, with an assist from modern medicine, I’ll ultimately fare better with the disease than the unfortunate Mr. Benjamin Moran, whose obituary I highlighted earlier. Somehow, calling my illness Creeping Paralysis rather than its more modern and scientific name gives me some strange sense of satisfaction. No beating around the bush with a name like Creeping Paralysis, it presents the illness in all its stark reality. Using a term as impenetrable as Progressive Multiple Sclerosis in some ways insulates those involved from confronting directly the potential horrors of the disease, a trick at which modern medical nomenclature excels. I’d rather stare this bastard right in the eyes and call it what it is: Creeping Paralysis, a name as ugly as the disease itself.

Oh, if anybody can shed any light on "the culture of the jumping cat" that is mentioned in Benjamin Moran's obituary, I would be forever grateful. Again, you can download the obituary by (clicking here). I'd just love to know what was meant in the 1880s by "the culture of the jumping cat", but can find no reference to it anyplace else. Please leave any ideas in the comments section of this post.