My apologies for the lack of a recent post, but my peculiar flavor of creeping paralysis has been especially troublesome of late, and I’ve been spending the bulk of my time in bed. I’ve also been dealing with what seems to be my own special version of the “post-lumbar puncture headache”, which in my case has manifested as extreme dizziness and nausea every time I assume an upright position. It seems that for whatever reason nothing about my disease ever stays on script, and even when I get a lumbar puncture headache it doesn’t present as a headache, but rather the aforementioned dizziness/nausea, making things much more confusing than they need to be. I’ve never minded that I've always marched to the beat of a different drummer, but the fact that my disease has decided to march to the beat of an entirely different symphony orchestra is really starting to bug me.
I needed the lumbar puncture as part of a diagnostic test called a cisternogram, done because of some recent suspicions that I might have a cyst pressing on the base of my brainstem right where my big, juicy, so-called MS lesion sits. Of course, if such a cyst did exist, it could be a game changer, and might explain much of the strangeness surrounding my illness. Getting rid of it would require some tricky open skull surgery that could be potentially dangerous in and of itself, but removing the cyst, if it actually were there, would likely have a very positive impact on my neurologic condition.
The cisternogram involved getting an injection of a contrast agent directly into my spinal column (hence, the lumbar puncture), followed by a series of CT scans, which would show the alleged cyst much better than a standard MRI. During my nearly ten year MS (or whatever it is the hell I have) career, I’ve literally had over twenty lumbar punctures (both for diagnostic and treatment purposes), and have had very little problem with any of them. In fact, I’ve often said that I’d rather have a lumbar puncture then dental work. Unfortunately, this time around, I’ve been zapped with post puncture putridity, which finds immediate relief when I relent from any efforts to achieve an upright posture and resume lying in a horizontal position. If the situation persists past this weekend, I’ll probably need a blood patch (click here) to seal the pinhole in the lining of my spine, but I’m hoping to avoid that, especially since Hurricane Sandy should be hitting here sometime Monday/Tuesday, making getting to the hospital for the procedure a bit of a hassle, to say the least.
Alas, initial indications are that the cisternogram did not detect a cyst, although I still need to do some final follow-up with my neurosurgeon. It’s very strange to find myself in the position of actually hoping for a brainstem cyst, the removal of which would necessitate getting my skull drilled open, but as distasteful as that prospect may be, it seems absolutely yummy compared to enduring the never-ending and increasingly disabling march of my disease progression. So, I’m pretty bummed that it looks like I don’t need delicate brain surgery. How’s that for a sentence I never thought I’d write?
On a much happier note, the fine people at BNAC (the Buffalo Neuroimaging Analysis Center) have decided to honor me and Wheelchair Kamikaze with a service award, which was presented on Saturday, October 20, at The Center’s “Brains and Gains” event (click here). The award is for:
"Service in advancement of the understanding of multiple sclerosis among patients worldwide through www.wheelchairkamikaze.comand contributions of The Buffalo Neuroimaging and Analysis Center as Advisory Council Member, donor and friend".
BNAC does cutting edge research on CCSVI and MS, as well as investigations into a host of other neurodegenerative diseases. I’ve been on the Patient Advisory Board of BNAC for about a year now, and was very surprised to be chosen for the award (and also quite chuffed, as my British friends would say). My heartfelt thanks go out to Doctor Robert Zivadinov, Doctor Bianca Weinstock-Guttman, Dean Michael Cain, the delightful Linda Safran, and the rest of the BNAC staff. The rigors of dealing with everything that comes with having a mysterious chronic progressive disabling illness have been getting kind of punishing lately, and word of the award was a wonderful surprise coming at just the right time. Muchas gracias, BNAC…
(Warning: the following essay contains frank descriptions of the physical ravages that can result from Multiple Sclerosis, and may be disturbing to some readers. Those who are sensitive, or would simply rather not know, should stop reading now. Really.)
For much of the healthy public, the face of MS comes in the form of celebrities who suffer from the disease. At the current time, here in The States the most prominent MS representatives are probably Ann Romney (wife of presidential candidate Mitt Romney), Jack Osbourne, and Montel Williams. Mr. Williams in particular has become a full-time MS activist, bringing welcome publicity to Multiple Sclerosis as he chronicles his struggles to fight the disease. I have nothing but respect for anybody battling this heinous scourge, and I don’t mean to belittle anybody’s misfortune, but I often find myself wishing that the public could see much deeper into the horrors that MS can inflict, beyond the relatively robust Mrs. Romney, the newly diagnosed young Mr. Osbourne, and the charismatic Mr. Williams.
The following snippet of an Associated Press article on Mrs. Romney’s experiences dealing with MS is typical of how the mass media often portrays Multiple Sclerosis:
“The wife of Republican presidential nominee Mitt Romney said Wednesday that her love of horses helped her overcome her fear that Multiple Sclerosis would put her in a wheelchair.”
As frightening as the prospect of being put in a wheelchair may be to the general public, the above quote significantly downplays just how monstrously devastating the effects of Multiple Sclerosis can be. I applaud any publicity that shines light on the disease, and certainly, it takes courage for those in the public eye to speak openly about their illness, but the beast that is MS can do far worse than leave someone reliant on a wheelchair. This public face of MS most often provides only a faint glimmer into the hellish world of those more severely afflicted with Multiple Sclerosis, a reality that can shock even those suffering from lesser ravages of the disease.
As a truly distressing depiction of the dark side of MS, the plight of former Mouseketeer and teenybopper starlet Annette Funicello stands in stark contrast to the sanitized version of the disease that is most familiar to the general public. Mrs. Funicello has been decimated by Multiple Sclerosis, its wicked impact leaving this once vibrant woman — who several decades ago epitomized exuberant youth — trapped in a living nightmare, her body gnarled and fully frozen while her mind presumably remains intact. For those who can bear to watch, Canadian television’s CTV network recently produced a video profile of Annette Funicello’s current condition, and her loving husband’s never-ending struggle to find some treatment to help relieve her suffering (click here for part one, and here for part two). Be forewarned that the content of these videos may scare the living shit out of you. Please don’t watch if viewing the worst that MS can do might have deleterious effects on your own ability to deal with the disease.
The past two weeks have not been kind to quite a few of my MS friends. One dear woman, who is amongst the sweetest souls I’ve ever had the pleasure to know, recently lost the ability to swallow, a development that necessitated the surgical implantation of a feeding tube into her abdomen. She will never again experience the simple pleasure of eating. Another friend, an accomplished artist who uses MRI images to make compelling pieces of visual art, informed me via email that she is now for all intents and purposes a quadriplegic, and can no longer use her own hands and fingers to bring her creative visions to realization. Instead, she “choreographs” a helper, providing verbal instructions to an able-bodied person in an attempt to maintain her artistic output. The anguish came through loud and clear in the voice of a big hearted man who has seen the disease rip apart not only his body but family and fortune too, while he haltingly told me that he had lost the ability to hold himself upright in a seated position, and has suddenly been plagued with fecal incontinence.
Through my many years of actively taking part in online Multiple Sclerosis forums, I’ve borne virtual witness to the steady decline and ultimate demise of more patients than I can bear to recall. The pattern has become hauntingly familiar; the slowly dwindling chronicling of ever mounting indignities and disabilities, and then a silence speaking loudly of total incapacity and sometimes even death. Occasionally, a family member will kindly put up a post informing the deceased’s online friends of their passing, but more often than not the person merely vanishes into the ether. I daresay my own online activities have similarly diminished as my disease (which still defies definitive diagnosis) has advanced, hopefully not a harbinger of things to come.
This is the true face of MS, a face little seen by the public at large. Of course, many patients suffer a far milder course of the disease, but a significant number do not. As much good as celebrity MS ambassadors can do, I fear they don’t convey the true depravity of the illness, and may in fact serve to lull the public into a sense of complacency regarding Multiple Sclerosis. Almost always, mention of the condition is accompanied by assurances of astonishing medical breakthroughs, of researchers on the verge of finding a cure, of proclamations that now is the best time in history to be diagnosed with MS. What’s left unsaid is that forms of the disease remain completely untreatable, and the pharmaceutical remedies available to those that are treatable are hugely imperfect, at best. An actual cure remains a distant dream, as the vast majority of research dollars are directed at developing new and supposedly better ways of suppressing the aberrant immune response allegedly responsible for the devastating effects of MS, resulting in drugs that can improve the quality of life of relapsing remitting patients, while quite possibly doing nothing to stem the actual progression of their illness. These drugs do not a whit to cure the disease, even as they reap huge profits for the companies that manufacture them.
The medical research model that has evolved in the United States is quite simply broken, warped by the corrosive influence of blockbuster drugs generating fantastic profits. Over 75% of medical research done in the US is funded by the major pharmaceutical companies, all of which are publicly traded entities. As such, they are mandated by law to be beholden to their stockholders, not to the patients taking their products. The job of a drug company CEO is to constantly expand his company’s bottom line, by endeavoring to create an infinite stream of ever-increasing earnings. Thus, research dollars flow to projects most likely to result in huge profits, and these projects tend to follow the lead of previously successful ventures. Scientific researchers, in need of steady income, are of course drawn to projects that will receive ample funding, and so a dysfunctional cycle has developed, one in which good people simply doing their jobs perpetuate a system of medical research that has failed to cure any major disease in decades. As the stream of government research funds dries up, due to harsh economic times and shifting political philosophies, the situation becomes even more acute. As the saying goes, the road to hell is paved with good intentions.
Perhaps if the public was privy to the hideous reality of those most severely afflicted with MS, and was made to understand that such cases are not mere outliers, their revulsion would spur an outcry that might shatter the status quo. It’s not as if there are no funds available to fuel the research efforts needed to conquer horrendous illnesses. The US Air Force’s newest jet fighter, the F-22 Raptor, comes in at a cost of approximately $350 million per airplane. The F-22 is a wondrous piece of technology, invisible to radar and able to cruise at supersonic speeds. It was originally designed to fight an adversary that no longer exists, the Soviet Union. The Air Force has 187 of these fighters. Would our nation’s defense be significantly hampered if the Air Force possessed only 184 of them? The roughly billion dollars saved could certainly fund a concerted national research effort that might rid mankind forever of diseases whose cost in human misery is incalculable. It’s simply a matter of priorities, and in the language of World War II GIs, the priorities of our society are FUBAR (Fucked Up Beyond All Recognition).
I’m constantly amazed at the courage, bravery, and fortitude displayed by the MS patients I’ve come to know, whose grit and determination serve to gird my own. If only our national zeitgeist would take its cue from the steadfast heroism of those afflicted with terrible diseases and those who care for and love them, and raise an outcry demanding that our nation flex its immense intellectual and financial muscle to find ways to better human life, rather invent technological marvels intended to destroy it. The generals could still have their high-tech toys, only a wee bit fewer of them. Perhaps if MS and other horrendous diseases were portrayed in their full horror, and not in the sanitized versions commonly depicted by our mass media, a change in priorities might be possible. There is a vast Holocaust happening just beyond the eyes of the public, a Holocaust that will likely continue until that public is forced to look upon the contorted faces of the afflicted, and is made to understand such a fate could very well be their own. As John Donne wrote centuries ago, “Ask not for whom the bell tolls, it tolls for thee…”