Wednesday, April 29, 2009

Becoming the Guy in the Wheelchair

I've recently heard from several people who are on the verge of needing wheelchairs, saying that my Wheelchair Kamikaze videos have helped them and their friends and families see that being in a wheelchair does not diminish the person sitting in it. That's a very hard and important realization to come to, and I don't mind saying that wrapping my mind around the fact that I was now "the guy in the wheelchair" was one of the most difficult adjustments I've ever had to make.

As I wrote in my previous post, the process of getting my wheelchair was a nightmarish twelve-month struggle of dealing with inept and corrupt wheelchair providers, and legions of insurance company hellions. The grand irony of the struggle was that I was fighting tooth and nail for something I was actually terrified of. Logically, and physically, it was clear that I needed a motorized power chair. Emotionally, on the other hand, it was anything but clear. Me, in a wheelchair? The thought left me feeling gutted.

In a way, the fact that I had to fight so hard to get the appropriate chair kept me from focusing too much on what getting that chair actually meant. On the day that the chair was finally delivered, I felt a momentary thrill of victory, followed by much longer moment of deep shock. So, this was my new normal. I was now the guy in the wheelchair.

I was well aware of how the healthy me usually interacted with people in wheelchairs. Or, rather, how I didn't interact with them. As my MS progressed, of course, I became more and more aware of the humanity of the individuals I saw in wheelchairs and on scooters, or struggling with walkers and other assistive devices. I knew all too well that their minds and personalities weren't broken, only their bodies, but that realization was a case of "it takes one to know one". When healthy, I think I was mostly just relieved that I wasn't one of them.

Well, now that person in the chair was me. After the wheelchair delivery guy had set up my chair and left, there I was, face to face with my new appendage. Being a boy (and make no mistake, at best I'm a mannish boy) I've always liked things with wheels and motors, and that fascination soon got the better of me. Alone in my small Manhattan apartment, I fired the damn thing up. Within seconds I had crashed into a coffee table and knocked over a wing chair. Out of sight from the rest of the world, I sat there giggling.

It's one thing, though, to zip around your apartment far from the public eye, but quite another to actually take the thing out onto the streets of Manhattan. For that momentous event, I waited for my angel of a wife to come home from work, and together we went for a spin around the neighborhood. My wife is relentlessly optimistic, and we share a keen sense of the absurd, and that first trip out in the wheelchair certainly did seem absurd, especially after I took a chunk out of the wall in front of the elevators on our floor. But we did it, and much to my surprise I wasn't the object of curiosity or derision, but was just "the guy in the wheelchair". It had been quite some time since I'd been able to go for a walk around the block, and the wheelchair was absolutely liberating. The size of my world had suddenly grown exponentially.

It took some time, but soon I found the chair to not only be physically empowering, but emotionally liberating as well. Have no illusions; people do treat you differently when you're sitting in a wheelchair. Because you are now stuck at ass level to the world, there's very little eye contact. Gone are the hundreds of little harmless flirtatious glances that passersby exchange almost reflexively. People are generally oblivious to anything going on below shoulder level, and some will actually walk right into you when you're sitting in a wheelchair. Like it or not, you are different. You're not walking around like everybody else; you are the person in the wheelchair.

But being the person in a wheelchair has its perks. If I ever tried to pull some of the stunts I do in the wheelchair while I was walking, like zipping through crowds, darting around people, and delighting in watching them scatter in front of me, I'd have gotten my ass kicked. But now, I'm the Wheelchair Kamikaze. Sorry if I startled you, but what are you going do, poke the gimp? Mind you, I'm not ever actually rude, I just like to go fast. Most people walk at about 3 mph. Well, in my chair, I can do almost three times that. It's almost like I have a superpower. Superman's got to fly, Wheelchair Kamikaze's got to go zoom...

I've also found that I'm much more likely to talk to strangers. I suppose this is a way of asserting my humanity. I'm not just a lump of flesh driving a wheelchair, I'm a human being, dammit, and a fairly entertaining one at that. Looking lost in Central Park? Here comes the Wheelchair Kamikaze to save the day. Arguing with your boyfriend over which tea to buy in the supermarket? Wheelchair Kamikaze has an opinion on tea, and he's happy to share it. I've found that once you pipe up, you often see a spark of understanding ignite in the person you're talking to. Hey, he's not just a guy in a wheelchair, he's a guy, in a wheelchair.

Damn right, and if you piss me off I'm going to run right over your tootsies.


Friday, April 24, 2009

You've Got To Fight For Your Right (To Be Sick)

As if battling a disease that in the old days was called "Creeping Paralysis" isn't enough, I've learned that the afflicted get the added bonus of having to fight a perpetual battle with the ungodly abominations known as insurance companies. Insurance companies rank right up there with the New York Yankees as the ultimate expressions of evil on earth. Their actions are enough to turn even the most rational person into the Unibomber.

A good friend of mine (another MS patient) was scheduled to have surgery this coming Monday, to try to fix her previously surgically "repaired" broken shoulder, which she injured in an MS related fall. The shoulder has been causing her unending misery for many months now, and my friend was hoping to finally find some relief from the constant pain. Unfortunately, that pain has now been compounded by the fiends employed by her insurance company, conniving ogres who have chosen not to authorize the surgery. Mind you, this is a surgery ordered by her orthopedic surgeon, not a cosmetic tummy tuck or facelift. They're forcing her to go through an appeals process, which won't be complete until sometime next week. So the surgery for Monday is off, hopefully to be rescheduled for the following week, if the insurance company's annointed ultimately deem the procedure worthy.

My own experience with healthcare insurance companies has been maddeningly similar. I suppose, on balance, I really shouldn't complain, as the company has paid for a myriad of expensive treatments and procedures. But I've also spent an insane amount of time on the phone with various insurance company goblins, desperately trying to convince them of the necessity of most of those procedures.

I'm generally very slow to anger, and not much of a screamer, but the insurance jackals on the other end of the line are possessed with an almost singular ability to turn me into the flesh and blood incarnation of Mount Vesuvius. I try hard to be a clear thinking individual, and strive to approach even the most emotional topics some Zen detachment, but put me on the phone with an insurance company rep and within five minutes I'm transformed into an eye bulging, mouth frothing crazy person, my senses of reason warped into the shape of a dyspeptic goat's small intestines, and my language skills diminished to the point where I can only make Tasmanian Devil noises.

It took a full year to get my wheelchair approved and finally reimbursed; a year spent screaming into the phone at the demonic entities employed by Blue Cross Blue Shield. I swear, as I talked to them I could hear their leathery wings lazily flapping in the background as they sharpened their pointy tails. When I wasn't busy trying to burst a blood vessel while holding a phone to my ear, I was scrambling to write scathing e-mails and letters documenting the fact that I was indeed partially paralyzed, and that the reason they call Progressive Multiple Sclerosis progressive is that it progresses, for God's sake. Unless they could supply me with a magic wheelchair that could fly me to Lourdes, I wasn't expecting to be going for a leisurely jog around the block any time soon.

Why they've given the name "Appeals Process" to the labyrinthine maze of bullshit they put me through is beyond me, because there's nothing appealing about it. It should more accurately be called the "Appalling Process". The situation only came to a resolution when an angelic RN, miraculously employed by the insurance company as my case manager (by mistake, I'm sure), interceded with her bean counting demonoid coworkers on my behalf. She has earned my undying gratitude and affection.

I'm a very nonviolent person, so mailing explosive devices to insurance executives is out, but I must admit to experiencing toe curling glee at the thought of a big box of ripe horse manure arriving on the desk of Blue Cross Blue Shield's Vice President of Interminable Agony...

Wednesday, April 22, 2009

Starting the MS Engine

Since I was first diagnosed with Multiple Sclerosis six years ago, I've probably been asked a thousand times, "What causes MS?" Seems like a pretty simple question, but the unfortunate truth is that nobody knows the root cause of Multiple Sclerosis. As with cancer, diabetes, and a host of other diseases, decades of research have allowed our best medical minds to only make educated guesses as to the genesis of the MS. Over the last 20 or so years, the prevailing hypothesis has been the "autoimmune" theory, which states that a patient's immune system for some reason goes haywire, and starts attacking their own cells. I often get the sneaking suspicion that diseases whose cause stumps our scientists are often labeled autoimmune, simply for lack of a better theory. Modern science isn't comfortable saying "I don't know", and when I see the word "autoimmune", I often put the words "I Don't Know" in its place. Multiple Sclerosis is an "I Don't Know" disease.

Through the years, I've come to look at the MS disease process as kind of resembling an automobile engine. In order to start a car engine, you must have gasoline in the tank, oil in the pan, and a key for the ignition. If one or two of these elements are missing, the car just won't start. In much the same way, MS requires a number of elements to be present for it to take hold of a patient's physiology. There is solid evidence that bacterial or viral infections play some part in the disease. Likely culprits include Epstein-Barr virus, Chlamydia Pneumonia, Varicella Zoster, and the Human Herpes Viruses. Many of these bugs infect large proportions of the population; for example, EBV is present in at least 85% of adult Americans. Obviously, only a tiny proportion of them develop MS, so EBV alone can't be the cause of the disease. There is also strong evidence that environmental toxins play a role in starting the MS disease process. Again, though, the vast majority of people exposed to common environmental toxins don't come down with MS. Therefore, there must be another component required for MS to take hold, most likely a genetic susceptibility.

It's been theorized that some people carry within their DNA remnants of ancient retroviruses that have over the eons incorporated themselves into the human genome. This retroviral DNA is normally inactive and completely benign, but perhaps the presence of a combination of infections and/or toxins can activate this DNA, and thus cause a person's immune system to see their own cells as harmful invaders.

So, to get back to the engine analogy, for a patient to get MS, they must have gas in the tank (a chronic viral or bacterial infection), oil in the pan (exposure to another environmental toxin or infectious agent), and a key to the ignition (a genetic predisposition to the disease). Without the right combination of elements present, even a person genetically susceptible to MS might never get the disease. Likewise, without genetic susceptibility, a person might be exposed to any number of MS triggers, and never develop Multiple Sclerosis. In my opinion, it's an unfortunate synchronicity of seemingly unrelated elements that turns the key that starts the MS disease engine. These elements may differ from patient to patient, and these differences in triggering elements might account for the vastly different ways that MS can present itself from case to case.

So, gentlemen (and women), start your engines. Or better yet, don't...

Thursday, April 16, 2009

MS on the Internet

Having a chronic disease like MS sucks in every possible way, and I can't imagine how isolated and underinformed patients must have felt before the advent of the Internet. The World Wide Web is a vital resource for information about the disease, and is also a place to find virtual communities of people sharing the mind frakking experiences that go hand-in-hand with living with chronic illness. As sympathetic and well meaning as our healthy friends and family may be, they simply can't understand the emotional and physical toll taken by MS, and the Web provides the opportunity to reach out and "talk" to other MS patients. I've found that this has made all the difference in making daily life with MS bearable.

Here's a list of websites that I've found invaluable since I was diagnosed. I'll start with a list of websites that provide reliable information about multiple sclerosis, its treatments, MS research news, and programs designed to help MS patients.

  • The Accelerated Cure Project's MS News Page-The Accelerated Cure Project is a fantastic organization dedicated to speeding up the time it takes between discoveries made in the lab and actual treatments given to patients. This page provides links to important news about multiple sclerosis, along with some commentary. The site was down for several months, but now it's back, and I'm glad.
  • MS Views and News-this site provides links to all things MS, and is updated frequently. It's a great place to keep up with breaking news, and I recommend signing up for their weekly newsletter, which provides a synopsis of the significant developments in the MS world from the previous week.
  • Medical News Today-this is a general medical news site, but if you register you can customize it to reflect on your particular interests. I have it set up to give me news on multiple sclerosis, and stem cells. The site also provides e-mail updates on the latest news on your chosen topics.
  • The Multiple Sclerosis Resource Center-this comprehensive site maintains separate pages for MS news, MS research news, and stem cell news. Located in Great Britain, the MSRC also provides many services for British MS patients.
  • The Consortium of Multiple Sclerosis Centers-this site is geared towards MS healthcare providers, but I've found it can provide valuable information for patients as well. It's also interesting to get some insight into looking at MS from the healthcare provider’s perspective.
  • The National Multiple Sclerosis Society-the NMSS website is extremely deep, and provides links and info on topics ranging from MS clinical trials to MS news to MS political activism to specific NMSS patient programs. The site also has informational videos, and topics customized for patients at different disease stages.
  • The Multiple Sclerosis Association of America-the MSAA offers some outstanding programs for MS patients, including a program that provides free mobility products, personal use products, and cooling garments to MS patients in financial need. In cases of insurance denials or non-insured individuals, MSAA can also assist with payment for a diagnostic MRI. The Association also provides MS life coaching services, a toll-free MS helpline, and reassurance calls. All in all, an extremely valuable resource.
  • Multiple Sclerosis Society of Canada-for Canadian MS patients, this site provides viable information regarding MS, including sections on living with MS, MS treatments, and MS research. (Added info by blog reader Weeble: I might add that the Canadian MS Society page has a feature called "Ask the Expert". This is an opportunity to ask a neuro a certain question about the disease.)
  • MS Neuro Ratings-this site allows MS patients to post reviews of their neurologists. Obviously, a site like this requires lots of user participation in order to remain current and accurate, so I'd urge all patients to stop here and write a quick review of their doctor. This site could become a very valuable resource for people struggling to find the right physician.

In addition to sites focused on MS news and research, there are many online communities in which MS patients can meet and interact with each other. Many of these sites have both bulletin boards and chat rooms, and each tends to have their own individual personality. Please note, this is by no means in a comprehensive list of all MS communities on the net, just the ones whose doorways I tend to darken.

  • MSWorld-I believe this is the largest online MS community. It has thousands of members and many different boards geared towards the varied aspects of life with multiple sclerosis. It is home to the only board I know of devoted to primary progressive and secondary progressive MS. This site is a good place to start for newly diagnosed patients, simply because of the size of its population and a number of topics it covers. Unfortunately, the site no longer allows the posting of direct Internet links, and doesn't allow members to send private messages to each other, which makes it difficult to form bonds with other members. The site is also heavily moderated, so that messages posted do not instantly appear on the board, but must first meet the moderators’ approval.
  • ThisisMS-this is a great site for MS research wonks. Lots of very smart people post here, and the site is more concerned with the latest developments in MS news and research than with giving its members the warm fuzzies. ThisisMS has individual boards for most of the current MS treatments, and maintains a running list of all MS drugs in the research pipeline. Don't get me wrong, there are some very supportive members on this site, but the conversations tend more towards research and science and less towards hand holding...
  • BrainTalk-this is a smaller MS community, with a nice mix of members offering general support and information about living with MS.
  • NeuroTalk- similar to BrainTalk, both in size of membership and in the scope of the discussions it hosts. A generally friendly place to find MS information and support.
  • MS Refugees-in all honesty, I don't frequent this site that much, but it does seem to be a supportive community and a good source of information.
  • MS Kurmudgeons Korner-this is a private, members only online community, that declares itself a "rainbow and unicorn free zone". It's for people who don't sugarcoat the fact that having MS completely sucks, but who can laugh their asses off in spite of it. I'm one of the moderators of this site, which is an extremely close knit group of just over 100 people from all over the world. Unlike the public sites listed above, this site cannot be accessed by search engines or Web portals, so anything that is said at MSKK stays at MSKK. The site maintains a very strict privacy policy, further ensuring that its members can feel safe discussing pretty much anything. If you think you'd like to join, read to the guidelines and check the site out. We're always looking for interesting folks to be part of the community...

As I said, this is by no means a comprehensive list of MS sites on the web. These are simply the sites in my arsenal, which I feel provide solid information and/or friendly support. Especially for those who find themselves on disability, having MS can be an isolating experience, and I urge those who haven't already done so to check out some of the online communities listed above. It helps tremendously to know that you are not alone in the struggle.

Sunday, April 12, 2009

The Best Thing That Ever Happened to Me...

I've had some terrific experiences in my life.

When I was a high school senior, late one night my friends and I broke into Shea Stadium, which until recently had been the home of the New York Mets. Under the cover of darkness, we sat in the stadium's clubhouses and dugouts, and ran around the very same base paths trod by our baseball heroes.

During my fifth ever round of golf, I hit a hole-in-one on a short par three hole.

In 1994, I won $14,000 in the Florida lottery.

But as memorable as these events have been, by far the best thing to ever happen to me is named Karen.

By some unfathomable stroke of good fortune, this incredible woman is somehow my wife. She is beautiful and kind, smart and funny, endlessly patient and relentlessly upbeat. Karen is simply a good soul. Despite my illness, the balance sheet of my life will forever be in the black because it includes her, a credit so positive that it far outweighs any debits that have or ever will come my way.

Of course, nobody is perfect. Much to my chagrin, Karen doesn't enjoy Godzilla movies. She's not that crazy about zombie movies, either, especially right before bedtime. (note to self: great idea for screenplay-"Godzombie")

Don't let anybody ever tell you that it's impossible to meet a great person in a bar, or that the only thing you are likely to pick up in a pub at 4 AM will doubtless require medical attention. I can happily report that both of those pieces of conventional wisdom have been proved wrong, as Karen and I did indeed meet in the early morning hours at a neighborhood saloon, an establishment that neither of us normally frequented. Call it coincidence or kismet, but in the unlikeliest of places I found the stuff that dreams are made of.

Karen and I married, as they say, "later in life", tying the knot in our late 30s. Just around the time of our first anniversary, I was diagnosed with Progressive Multiple Sclerosis. It would have been perfectly understandable if Karen had decided that this was simply too much to deal with and had taken a powder; it certainly wasn't what she signed up for. I was stuck with the illness, but Karen could have opted out, and I often wonder if I would have been as brave and steadfast at the news had the roles been reversed.

Since that unhappy moment, her devotion has been inspirational. She's been by my side through every doctor's appointment and frightening medical procedure, has quite literally picked me off the ground physically and lifted me up emotionally, and has done it all with strength, humor, and grace.

The rest of the world sees a kooky and funny and sometimes intrepid Wheelchair Kamikaze; Karen lives with the human being who struggles daily with the despair that comes with progressive illness, who tries his best to keep an even keel through the storm, but often falters. She is my anchor and my light, my comforter and my guide, my lover and my friend.

When in moments of darkness I ponder whether there is order and justice to the universe, whether we are all alone or guided by some unseen hand, I have only to look to Karen to see that there is reason for faith.

To borrow a line from Brian Wilson, God only knows where I'd be without her...

Friday, April 10, 2009

My MS Diagnosis Is In Doubt

I've always been a little bit different, so it stands to reason that my experience with MS would follow suit. I've had doubts about my diagnosis of Primary Progressive Multiple Sclerosis right from the start, because in all of the many hours I've obsessively spent researching the disease and communicating with other patients, I've never come across another case quite like mine. The neurologists have always labeled my disease "atypical", and now it seems that it might be so atypical that it's actually another disease.

Unlike the vast majority of MS patients, my MRI images have not changed one bit since my diagnosis in May of 2003. They've always shown just two lesions, a small one in my brain, and another at the base of my brainstem. The one in my brain is probably not doing anything too nasty, but the one near my brainstem is causing me tremendous problems. Here are some images of the Wheelchair Kamikaze's brain, with arrows pointing out my two lesions. Click on each image for a larger version.

Quite a winsome brain, wouldn't you say? I'm quite attached to it. Or, rather, is it attached to me? Maybe I'd best see a metaphysician...

The literal meaning of "multiple sclerosis" is "many scars", because the disease is named for the numerous scars, or lesions, that it leaves on the central nervous system of its victims. Unlike the MRI images of most MS patients, which change over time, mine have been rock stable, and rather than multiple lesions, they show only two, so my disease would more correctly be called "Double Sclerosis", if there were such a thing.

Examinations of my spinal fluid have also never shown any of the telltale signs of MS, yet my physical condition has continued to deteriorate steadily since 2003. Back then, my only symptom was a slight limp; fast forward to today and my right arm and leg are pretty much useless, and my left side is weakening, after being left untouched for the first four years of my illness.

Because my disease is so atypical, my neurologists recently decided to review my case and run some more tests. Lo and behold, my longtime suspicions about my diagnosis have been validated; the doctors now suspect that I don't have PPMS, but rather some other neurodegenerative disorder.

Unfortunately, it's not clear what I do have. The possibilities include Neurosarcoidosis, AMN, a spinal tumor (very unlikely, I'd be dead by now), PLS, Sjogren's, and a whole host of much rarer diseases, such as mitochondrial disorders. It could also still turn out to be PPMS. Quite the menu of medical delights, isn't it? Really, I'm not that hungry, I think I'll skip the entrée, check please...

Needless to say, this has all been unsettling, confusing, and scary. Most of the alternate diagnoses offer little in the way of treatment, so, like PPMS, they are currently untreatable and incurable. They're all also progressive, which paints a forbidding picture of the future. So, once again, it's time to gear up for the fight. After licking my wounds a bit, I'll force myself to choose optimism over pessimism, and then start fighting for answers. Whatever this disease is, if it's going to take me down, it's going to take me down swinging like a drunken brawler, with both fists bloodied. Well, maybe not my weak, floppy fist, but I promise, my other fist will definitely be bloodied...

Saturday, April 4, 2009

We Shall Overcome

Today is the 41st anniversary of the assassination of Dr. Martin Luther King Jr. His messages of hope, peace, and equality for all human beings still ring loud through the years, and are as vital today as when he first spoke them so eloquently all those years ago.

No matter what your ethnicity, those of us who are disabled form a minority group still struggling for rights that the able-bodied take for granted. There are places we cannot go, and things we cannot do, simply because our towns and cities, and our neighbors and friends, have not made allowances for the difficulties we face.

Many of us in wheelchairs, or scooters, or who must use canes or braces, are also fighting dreadful diseases, most with a fierce courage and fortitude that those not afflicted too easily overlook. Heroes are not only those who perform feats of valor and bravery in a public way, but also those who quietly overcome pain and illness each day, simply doing their best to live their lives and remain a presence in the world.

It is to these unsung heroes, and those who love them, that I hold out a weakened hand and say "We Shall Overcome"...

Please enjoy the following video, and reflect on the life and death of the man who spoke these words, words that will continue to inspire courage and compassion as long as there are people willing to listen.

Friday, April 3, 2009

Kamikaze Visits MS Yoga Class

Last night, my MS clinic held a free yoga class, designed specifically for folks with Multiple Sclerosis. I've long been attracted to Eastern religious philosophies and practices, and if you're familiar with Zen thought, you'll recognize some of its basic tenets in my "Life Bisected, and Dissected" posts on this blog.

I've always wanted to try yoga, especially the breathing and meditation facets of the practice. I've been aware of the mind-body connection since I was a child, when I would quite often throw up at the slightest emotional upset. I guess I was a little bit sensitive. As a toddler, my mother says that I would meet most any challenge with a good heave. I was like one of those cherub fountains in Rome, only with vomit instead of water. Not the most charming trait in a child, and kudos to my mom for her patience, nurturing, and carpet cleaning skills.

Luckily, the throwing up thing didn't follow me into adulthood, as I'm sure it would have been quite frowned upon in the workplace. Still, I experience emotional upset in a very physical way. So, I'm not a hard sell when it comes to the mind-body connection.

It was lightly raining last night, which gave me a chance to do some Wheelchair Kamikazeing on the slick city streets on the way to class. Since it was getting dark out, I couldn't do any videotaping, but zooming through the rain at dusk and startling umbrella toting pedestrians is something I'm going to have to do more of. I figure that as long as it's not raining too hard, my power wheelchair probably won't electrocute me. If anybody knows otherwise, I'd appreciate a heads up in the comments section, before I give myself the "Old Sparky" treatment...

I arrived at the class to find that I was one of four MS patients attending, and that the instructors were two lovely ladies who exuded wisdom and serenity. Each of the students in the class suffered from the different levels of disability. One had been diagnosed only a few weeks ago, and wasn't exhibiting any outward symptoms, another walked with a cane, another used a scooter, and I was there with "Legs", my power wheelchair.

To the accompaniment of candlelight and soothing music, the instructors led us through various exercises, each involving different breathing techniques and low impact stretching, and some included chanting. I've never been much of a chanter, but the combination of deep breathing and rhythmic chanting really had a dramatic effect, helping me to focus inward, achieve deep relaxation, and experience my body. I'd really rather experience somebody else's body, because mine functions a little less well than Quasimodo's, but you've got to play the hand you're dealt.

The instructors tailored each exercise to the individual abilities of their students. My right side is pretty much out of action, and my left side leaves a lot to to be desired, but the gentle ladies in charge were able to work some physicality into even my routine. The class was topped off with a short neck massage and some aromatherapy, and the entire experience was an extremely positive one.

If you get the chance to yoga, I say go-ga.

Thursday, April 2, 2009

MS and Me: What a Treat(ment), Part Four

Okay, here's the last installment of my treatment chronicles. Sorry for the length of all of these posts, for a shorter read you might want to try "War and Peace" ...

CellCept: CellCept is an oral drug that suppresses the immune system that was originally developed to combat organ transplant rejection. Do you see a pattern here, in all of the treatments I've mentioned? All current MS treatments seek to either modulate or suppress the immune system. They've all also completely failed me, the little bastards. I'm pretty sure my immune system isn't the mad sculptor that is continually chiseling away at my nerve cells.

Anyway, CellCept... I did this drug for about three months in the spring of 2008. It had absolutely no impact on my MS (shocker!), and I didn't feel much in the way of side effects, except for some extra fatigue. As any MS patient will tell you, fatigue is not something we're lacking, so there's really no need for "extras", thank you.

CellCept has been implicated in opening patients up to PML, the same brain infection that haunts Tysabri patients. It stands to reason that any drug that suppresses the immune system to a significant degree will potentially leave the patient open to opportunistic infections that are normally kept under wraps by a fully functioning immune response. I have a fear that doctors and researchers are really opening up a Pandora's box in tinkering so profoundly with the immune system, which after all has evolved over millions of years to reach its current state of sophistication. Knocking out the vast portions of it seems to be a bit of a gamble, but any port in a storm, I suppose...

Rituxan: Rituxan is a drug in the same family of drugs as Tysabri, called monoclonal antibodies. These drugs target very specific cells within the immune system, in the case of Tysabri, T cells, and in the case of Rituxan, B cells. Without going all biology professor on you, T cells attack potentially harmful invaders themselves, and B cells produce antibodies that do the attacking. Rituxan was developed to treat B cell lymphoma, a role in which it's been very successful at for the last 10 years.

Based on some evidence that Rituxan might help a subset of PPMS patients, Dr. Big Brain and I repeatedly petitioned my insurance company to approve my taking the drug, which required quite a bit of work, because a single round of Rituxan infusions costs about $20,000.

I did the infusions (two intravenous infusions, given two weeks apart) in September 2008, and since then I've been hobbling around with no B cells. So far, I've successfully avoided getting any horrible deadly brain infections, but I also seem to have avoided getting any benefit for my MS as well.

I had really high hopes for Rituxan, but it appears to have failed me completely. For the drug companies, it's anything but a failure, at 20,000 bucks a pop.

So, there you have it, my total treatment history over the last six years. The only thing that ever helped was a massive dose of steroids, which unfortunately left me with dead bones in both shoulders and both hips. Not a terrific trade-off...

So, modern medicine has proved a dismal failure in treating my MS. PPMS is notoriously hard to treat, and if you're an RRMS patient reading this, please don't be discouraged. Almost all of the drugs I've listed here have shown efficacy in beating back RRMS, and there are more drugs just over the horizon that promise even better effectiveness in treating Relapsing Remitting Multiple Sclerosis.

As for PPMS, I'm very hopeful that stem cell therapy will at least allow doctors to repair some of the damage done by the disease, even if stem cells won't cure the disease itself. Personally, I'd be very happy with some nervous system repair. Ecstatic, even.

There are currently stem cell trials going on in various countries around the world, using both adult and embryonic stem cells, and there are perhaps half a dozen clinics offering stem cell treatments to patients that can pony up the big bucks and get their asses to Costa Rica, Israel, or wherever other exotic location the patient’s chosen clinic happens to be. There are no guarantees that any of the treatments these clinics offer will actually help anybody, and some of them appear to be outright scams, but a few are doing scientifically valid work, with varying degrees of success. Within the next few months, I may be "leavin’ on a jet plane", if you catch my drift...

Wednesday, April 1, 2009

MS and Me: What a Treat(ment), Part Three

Yet more of my "Parade of MS Treatments"...

Tysabri: I did four doses of this controversial medicine in the fall of 2006. Tysabri was originally introduced in 2004, but was quickly pulled from the market when the little fact was revealed that several patients had died during its drug approval trials, from a brain infection called PML. Tysabri works by profoundly inhibiting immune system activity in the central nervous system, which is helpful to MS patients, but this also opens some patients up to infection.

The MS community was rocked by the demise of Tysabri, as its original trial results showed it to be immensely more effective in treating the disease than existing therapies. After further testing, the drug was reintroduced in September 2006, with stringent safety programs put in place, as mandated by the FDA. As with almost all MS treatments, Tysabri is only approved for RRMS patients, but Dr. Big Brain and I decided to give it a go since my condition was clearly worsening again after the temporary benefit I'd seen from intravenous steroids (see part two). It was kind of a scary decision, given the brain infection thing, but I decided early on that if this disease was going to take me down, it was going to take me down swinging.

After four doses of Tysabri, my condition continued to worsen, so we decided that I would come off of the drug. No sense risking potentially deadly brain infections when I was seeing no benefits. Tysabri remains in use today, primarily for RRMS patients, and has proven to be extremely beneficial to many who take it.

Plasmapheresis: Now, this one was more fun than a barrel of demented, sadistic, bloodsucking monkeys. Since Multiple Sclerosis is thought to be the result of a misguided immune system, in theory, at least, stripping some of the components of the immune system from a patient's blood should result in some relief from the disease. The one thing you quickly learn when dealing with Multiple Sclerosis, though, is that "theory", and "reality" are often two entirely different things.

When I underwent plasmapheresis, blood was continuously drawn out of my left arm via an intravenous tube, fed through a machine that looked like it came straight out of a 1950s science-fiction movie, and then returned back into my body through a tube attached to my right arm. The science fiction machine stripped the blood of plasma, which contains antibodies and other immune system components, and replaced it with sterilized plasma from a blood bank.

It sounds neat and simple, but undergoing plasmapheresis was actually kind of horrific. Because a large volume of blood is needed to move through the science fiction machine, the needles stuck into my arms were the size of garden hoses, and, naturally, the nurses had trouble getting them in. This led to my having several fainting spells, and I had to go through this procedure five times in a two-week period. During one of the treatment sessions, a tube came loose, and blood, my blood, started squirting all over the room. I remember sitting there and watching the hijinks, thinking, "this would be really really funny if it wasn't MY BLOOD! MY BLOOD SQUIRTING ALL OVER THE FREAKING ROOM!” The nurses did a nice job of surreptitiously wiping the splattered blood off of the walls, as if seeing them wipe the blood off the walls would be any more upsetting to me than watching the blood get onto the walls...

After each treatment, I was hit with a fatigue more intense than any I've ever experienced before or since. It felt like it was either sleep or die.

When all was said and done, plasmapheresis did absolutely zilch for me, other than give me the unique opportunity to feel like a victim of Count Dracula. Of all the treatments I've been through, plasmapheresis was definitely the worst.

In To Be Continued...