Saturday, October 24, 2009

Bought Myself a Present, and Some Other News...

The neurologic stuff has been whacking me recently, so I decided to spoil myself with a somewhat extravagant present. I've been jonesing for a new camera for a while now, but because any camera I use needs to have several specific features to make it Wheelchair Kamikaze friendly (most notably, a flip out viewscreen, and both still and video capabilities), my choices have been limited. You can see my basic setup, with my old camera, here.

This past spring, Panasonic announced it would be marketing very sophisticated camera that appeared to have the perfect combination of Wheelchair Kamikaze features. The camera didn't hit the market until mid-September, and I placed an order for it on the first day it became generally available.

So, I'm now the proud owner of a Panasonic GH-1. The camera takes beautiful still photographs, and also does HD video, which means that you should see a significant increase in the image quality of future Wheelchair Kamikaze videos. Oh boy!

I've already shot some raw footage for a new video, a trip to the Museum of Modern Art, so I'll have to get busy editing it. Unfortunately, for the next several weeks I'm going to be dealing with cataract surgery (yes, despite being 46 years old, I'm doing my best impression of a 90 year old), so I'm not sure that my eyes will be in "video editing" condition. In fact, I'm not even sure if my eyes will be in "computer viewing" condition, so if my posts here become a little less frequent, please understand.

The eye doctors are telling me that my distance vision should be vastly improved almost immediately, but that my close-up and reading vision will definitely require glasses, which I won't be able to get until after the surgeries have healed sufficiently for my vision to become stable. My right eye is being operated on this coming Tuesday (October 27), and the left eye the Tuesday after that (November 3). I'm sure I'll figure something out, though, so you'll not be free from my relentless blatherings for too long...

This past week I was down in Bethesda for yet another visit to the National Institutes of Health, which I'll report on when all the information is in and I've been able to discuss it with my doctors. No sense spouting off here before I know what the hell I'm talking about...

Anyway, here are a few photos that I've taken with the new camera. These were shot in Central Park, which is an ever-changing photographer's paradise. Please feel free to comment and critique to your hearts content. I'm always open to constructive criticism (and lavish praise). Click on the thumbnail to see a full-size image...

Saturday, October 17, 2009

Choosing the Right MS Doctor

My health comes first. (014/365)Image by angelamaphone via Flickr

I regularly receive inquiries from newly diagnosed patients asking for recommendations on "the best MS doctor". Often, the request comes in the form of the question, "Can please you tell who is the best MS neurologist in the world?" I'm afraid my answer often disappoints those reaching out to me, because the truth of the matter is that there is not any one doctor out there who can claim the title of "World's Best MS Neurologist".

Certainly, competency levels can vary from physician to physician, and it's important to choose a doctor who knows what they're doing (and there are some who don't). That said, all MS neurologists draw from a standard body of knowledge, the sum total of all of the MS research that's been done up to this point. MS is an incredibly complex disease, and despite decades of research, there is little real understanding of the mechanisms underlying the MS disease process. There are theories, but little in the way of proven fact.

Since so much about MS remains unknown, a good physician will be open-minded, and not be locked into traditional medical dogma. Recent research has overturned many long-held assumptions about MS, and much has yet to be discovered. A closed minded physician who dismisses new ideas out of hand should be of no use to you, but you do want a doctor who maintains a healthy skepticism of all of the "theories du jour" that tend to whip around the Internet. Your doctor should be willing to listen, but also willing to cogently explain the reasons behind the skepticism that, as an educated patient, you will almost undoubtedly run into.

Unfortunately, there is no MS Wizard out there, who carries within his brain unique knowledge and a secret formula for defeating MS. There are many brilliant doctors practicing MS neurology, but they all have access to the same bag of tools, which includes the same diagnostic tests and the same menu of approved MS treatments. Some are more aggressive than others, and some more willing to try "off label" treatments, none of which at this point has proven to be a miraculous elixir. It's important to choose a doctor whose level of aggressiveness matches your own. All doctors have their hands tied by health insurance companies, which routinely reject requests to pay for experimental treatments because they haven't been approved by the FDA specifically for Multiple Sclerosis.

I've personally been examined by some of the top MS neurologists in the United States, veritable celebrities in the field, almost all of whom I've found to be deeply intelligent, intensely thoughtful, and very compassionate human beings, in addition to being terrific clinicians and researchers. None of them has been able to solve the riddle of my disease, or been able to suggest treatments that the others hadn't already mentioned. Currently, there are only a limited number of treatment options out there, and for those of us with progressive disease, those choices are even fewer. The best of the best physicians try to think outside the box, but even there, answers are hard to come by.

When choosing a doctor, it's very important that MS patients see an MS specialist. The disease is too complex, and the research being done too dynamic, to leave oneself in the hands of a general neurologist. All of the top MS physicians I've seen are passionate about their work, nearly to the point of obsession. These are doctors who have never cured any of their patients. They've been able to help alleviate some of their patients’ symptoms and suffering, but none have ever been able to declare a patient free of disease. I imagine this is what drives the frustration that I've seen in the eyes of the best of these doctors.

Obviously, competency is a primary factor in choosing a doctor. Equally important, though, is finding a physician who makes you feel both confident with your treatment choices, and comfortable with the doctor themselves as a human being. They don't need to be your best friend, but neither should they be holier than thou jackasses. When choosing an MS neurologist, you are choosing someone with whom you'll be maintaining a vital long-term relationship. MS is a chronic illness, and until that momentous day that a cure is found (don't hold your breath), MS patients will be dealing with their disease, and their MS specialists, for the rest of their lives. Your MS doctor must be someone you can trust and rely on, and who accepts you as a partner in your fight against the disease.

Big egos are par for the course with top doctors, it's part of what drives them to be top doctors. But your relationship with your physician must be a conversation, not a lecture. As a patient with MS, it's your obligation to educate yourself about the disease to the very best of your ability, and to take an active role in the ongoing treatment of your illness. The doctor patient relationship should be one of mentor and student, not that of master and serf.

Also of great importance is the efficiency and demeanor of the staff of your doctor’s office. Most of the phone calls you make to your MS clinic will not be handled directly by your physician, but by his administrative staff, nurses, and associate physicians. Nothing is more maddening and frustrating than an unreturned phone call when you develop a troubling new symptom, need a prescription refill, or otherwise have a question regarding your condition. Such delays are rude and dangerous, and should simply not be tolerated. Certainly, in a busy neurologist's office, messages can sometimes fall through the cracks, but a repeated pattern of such behavior is reason enough to change doctors. Remember, your doctor and his staff work for you, not the other way around.

Choosing the right doctor is vitally important, but the quest to find "the best MS doctor in the world" is, sadly, a fool’s errand. I know this from first-hand experience. If you are dissatisfied with the level of treatment you are getting, then by all means seek out a new doctor. If you are uncomfortable with your diagnosis, you owe it to yourself to seek out a second, and even a third, opinion. Dispense with any notions, though, that you will find some magical MS alchemist, who will somehow conjure up a cure for you.

Keep in mind, too, that even the best medical schools can turn out less than stellar doctors. Remember, you are not choosing a fancy degree hanging on a wall, but a human being with whom you will likely be spending many years, not to mention many dollars. Choose well...

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Wednesday, October 14, 2009

Dramatic Breakthrough: Learning to Juggle May Help Fight MS

early Egyptian juggling art :en:fr:Image:Jongl...

British researchers have discovered that learning to juggle three balls may help MS patients fight the ravages of the disease.

Oh, boy! If they'd only learned this seven years ago, when I was first diagnosed, not only would I undoubtedly still be walking, but I'd probably be working in Las Vegas with the Cirque du Soleil. Alas, now I'm shit out of luck, because I don't think I could learn to juggle with only one working arm. The problems of one man shouldn't diminish the fantastic implications of this discovery, though. Why stop at learning to juggle three harmless little balls? Certainly, juggling something more difficult than balls, like chainsaws, or flaming swords, or angry raccoons, or flaming angry raccoons strapped to chainsaws, would require even more dexterity and concentration, and thus be a far more powerful mechanism for myelin repair.

I wonder why the researchers chose juggling? How shortsighted of them. Surely other, more challenging circus activities would be of much greater therapeutic value. If focusing the mind to learn juggling can help MS patients, can you imagine what lion taming could do? Or how about learning to be the man on the flying trapeze? I could probably do that even now, in my relatively advanced state of disability. My legs are so stiff from spasticity, they could just hang me upside down from the bar and give me a push every now and then. If this didn't improve my condition, they could always stick a wire up my backside and a lightbulb in my mouth, and put me to good use as a chandelier. After seven or eight hours of swinging back and forth, though, I'm positive I'd regain all of my lost functionality, and be able to do a mean Lindy, high leg kicks and all. And forget about merely treating MS, attempting to do a high wire act would almost certainly be a cure, especially if they forced patients to walk the wire without a net. If learning to tight rope walk didn't cure them, then falling 150 feet to the ground surely would. Extensive peer reviewed research has clearly demonstrated that death definitely cures MS,.

Uh-Oh, I just thought of a problem with this theory, a fly in the ointment that I don't think the researchers even considered. Maybe it's not the act of learning to juggle that's therapeutic, but the sheer joy one experiences at the very prospect of living the circus life that causes the brain to heal itself. Maybe if MS patients simply adopted circus personas, we would have this disease licked in no time. I can see it now, MS patients the world over, struggling, limping, and driving around in their wheelchairs and scooters , all wearing orange fright wigs, red plastic noses, and oversized exploding shoes. At the very least, it would make time spent in the neurologist's office waiting room a lot more interesting.

But wait a minute, if people with MS started dressing like clowns, how could anyone tell the researchers apart from the patients?

(In all fairness, the research that was conducted is scientifically valid, and demonstrates that the human brain has a capacity for plasticity. The researchers showed that when healthy patients learn a complex physical task, such as juggling, there is a measurable increase of the white matter in their brains. Since one of the most injurious actions of MS is the destruction of white matter (myelin), the researchers postulate that this discovery may lead to future treatments for MS.

It's the idiots who write the headlines that really deserve lampooning. And harpooning...)

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Sunday, October 11, 2009

Too Late Smart...

I had the pleasure this week of a visit from an old and dear friend, who's been living in Beijing for the last year. Way back in the Cretaceous (the 1980s), he was my college roommate and partner in crime. We had much fun together in those days, and our relationship long ago transcended friend and became family.

Mike TysonOne night this week we wound up watching a pay-per-view documentary on Mike Tyson. Yes, despite our intellectual tendencies, sophisticated pretensions, and supposedly sensitive souls, both of us still get a kick out of watching two guys trying to knock the snot out of each other. Back in his prime, Mike Tyson was the ultimate snot knocker. His story since, though, has been an epic tragedy of almost classical Greek proportions. Here was the most feared and physically powerful man of his time, brought down by inner demons for which his might proved no match, ultimately to become an object of scorn and ridicule. The film's narrative is driven by Iron Mike's own words, and rather than the brutal thug you might imagine him to be, he comes off as an extremely wounded, very agonized human being, and one with a strikingly philosophic take on things.

You wouldn't expect it from a man sporting a Maori face tattoo, who was convicted of rape, and is infamous for biting off the ear of one of his opponents, but Tyson espoused several insightful ideas that really gave me pause, and left me thinking for days. One of them was the phrase "too soon old, too late smart". I was pretty certain that Tyson didn't originate those words, and a quick Google revealed them to be the title of a self-help book that seems to have garnered some good reviews. Not that I'm recommending the book, as I haven't read it, and I find most self-help books to be crap, the psychological equivalent of a Big Mac. Be that as it may, its title certainly rings true. Too soon old, too late smart. Pretty well sums up the totality of my existence in six syllables.

This week, after several months of wonky stuff going on with my eyes, I finally went to the eye doctor. I'd shrugged off my weird eye shenanigans as another of MS' s many pleasures, as it's well known that Multiple Sclerosis likes to make playthings out of optic nerves. It's been getting increasingly difficult for me to see lately, with my vision getting kind of hazy, and multiple images surrounding any bright object I look at, so, finally, off to the eye doctor I went.

One quick gander into my eyeballs, and I was unceremoniously told that I have cataracts in both eyes, and will need corrective surgery in a few weeks. In the parlance of the Internet, WTF? Talk about "too soon old", what am I, 93? Between progressive MS, cataracts, and the handful of other medical delights that I've been graced with, there's hardly a 93-year-old in the world that would willingly trade bodies with me. It would likely be hard to find even a deceased 93-year-old that would make that deal, if deceased persons could in fact make such deals. They'd probably be like, "Um, thanks, but, um, really, no... I think I'll stick with the fetid rotting corpse, thank you. But best of luck to you...".

On the bright side, cataracts are very treatable, and the doctor said that after surgery I might not even need glasses anymore, but really, when is enough enough? Nothing to do but laugh, at myself, at my predicament, at the universe, at life and all of its peculiarities. It's no wonder that the Buddha is often depicted smiling. The world is nothing more than a stage for a theater of the absurd.

And that brings us to the second half of Mike Tyson's quoted wisdom, "too late smart". If I had only achieved this attitude of bemused detachment earlier in life, I could have saved myself years of heartache and misery. Sure, my newfound knowledge and take on life is serving me well through all the bullshit I now have to deal with, but it would have served me even better when I was healthy. Back then, when I still had the infinite power to redefine and redirect my life in a way of my own choosing, I was instead mired in a thicket of negative emotions and self-defeating attitudes and actions. I managed to achieve a certain level of professional and material success, but never found inner happiness. Now that my life has been redefined and redirected for me, by a completely suck ass disease and its coterie of little friends, I've been forced, too late, to get "smart".

To those healthy folks reading this, and even to those whose MS has been mild, I urge you with every fiber of my being to go to sleep tonight resolved and resolute that when you wake up tomorrow you will begin to conduct, with brutal self honesty, a complete inventory of your past. You will admit all of your mistakes, recognize all of the behaviors and attitudes that have thus far held you back, acknowledge all of the actions of others that have done you harm, and then decide to no longer allow any of it to have a negative impact on your present and future. The only power the past has on you is the power you allow it to have. You must take full ownership of all of the positives that you've experienced and accomplished, learn from all of the negatives, and then kick those negatives to the curb. Forever.

Much easier said than done, I know, but nothing worthwhile ever comes easy. There can be no more important exercise you can undertake. Forget about the stair stepper and the elliptical trainer for a minute, and get your mind right. Wishing won't make it so. This will be hard work. Making an honest assessment of yourself, and taking an accounting of all of the old ways and days that have added up to make you the person who you are now, will likely be very tough and even downright painful. The most difficult form of honesty to practice is self honesty, and it is to ourselves to whom we tell the most destructive lies. Come clean with yourself, own up to all of your past failings and misdeeds, resolve to forgive yourself as well as those who have wronged you, and you can begin to take the steps necessary to create a new and contented reality.

The Hasidic Jews have a proverb the gist of which says that the universe creates itself anew each and every dawn. It's their way of saying that the past has no real influence on the present. If this holds true for the universe, it must also hold true for the individuals in it. The only person that can loosen the grip that the past has on your present is you. Psychologists, spiritual gurus, and wheelchair kamikazes can ultimately only offer advice, it's up to you to make it so. The process should not be without joy, either; exult in your power to transform yourself.

As my grandmother used to say in times of trouble, "Ladies and gentlemen, take my advice. Pull down your bloomers and slide on the ice". Wise words, those, the equal I think to "too soon old, too late smart". I wonder if I could get that message to Mike Tyson...

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Monday, October 5, 2009

Footprints and Shadows: The Tao of MS

Research Association of Laozi Taoist Culture

Research Association of Laozi Taoist Culture (Photo credit: Wikipedia)

Getting MS was never on anybody's agenda. None of us ever planned on getting sick, and the shock of the diagnosis is an uppercut to the jaw, a stunning blow that knocks some patients off balance forever.

During the never-ending process of learning how to spiritually and psychologically deal with my progressing disability I've found great solace in the Eastern philosophies of Zen Buddhism and Taoism. These philosophies emphasize that we each create our own reality through our perceptions and emotional responses to all that happens around and to us. Since our emotions are born of us, and not we of them (as popular culture would have us believe), we have the power to create our own happiness despite whatever circumstances life throws at us, by exercising control over those emotions. Nothing that happens to us is inherently "good" or "bad", it is our perceptions and reactions to the goings-on of existence that define them as such

This is not an easy concept to grasp, let alone put into practice, especially when you find yourself experiencing "creeping paralysis" (an actual early medical term for Multiple Sclerosis), but the only way to avoid utter despondency and hopelessness in the face of such a predicament is to mindfully and willfully refuse to define whatever obstacles life challenges you with as miserable. Happiness is a conscious choice that must come from within, and those who rely on outside sources as their fount of happiness are doomed to a life of perpetual discontent.

In fact, we live in a society that has evolved to deliberately breed dissatisfaction. Discontent fuels our economy; we're constantly bombarded by messages telling us that our problems can be solved through consumerism, that they stem from the fact that our teeth aren't white enough, our possessions – no matter how plentiful – are somehow lacking, and that popularity and sex appeal can only be attained by drinking the right beer or using the latest breakthrough in armpit deodorants. The true meaning of success is a BMW, sexual fulfillment awaits those who don the right pair of Levi's, and self-worth can be found in a really cool pair of Nikes. Happiness is equated with physical beauty, and the modern mythology of movies and television indoctrinates us with the belief that others can "complete" us and bring fulfillment that in reality can only come from within. This search for identity in romantic attachment has led to a divorce rate of over 50%, and instead of bringing everlasting happiness breeds a perpetual state of dissatisfaction we often feel for both our mates and ourselves.

It's incredibly easy to be seduced by these messages when you're healthy and striving to attain some preordained definition of success, even if you consider yourself enlightened and aware of the efforts being made to seduce you. Before I was forced to the sidelines by MS I made my money by playing a part in manufacturing these illusions, and still I was susceptible to them.

Once chronic illness hits, though, it's as if a veil of delusion is ripped away, and blindness abruptly gives way to vision. Suddenly, the absurdities of these notions of consumerist contentment come into crystal view. My physical condition won't allow me to drive a BMW, or any automobile, for that matter (and I was a guy who loved driving, zoom, zoom), fumbling with the button-down fly of the hippest pair of ridiculously expensive jeans would soon find me peeing in my pants, and unless those Nikes can somehow make my legs work again, they just aren't gonna do me any good. Still, such messages are beguiling, siren songs that no longer entice me to buy, but now serve to call attention to the many losses I've suffered.

Faced with these distractions, it's easy to lose oneself in the noise. When healthy, although I had an intellectual understanding of the basic tenets of Eastern thought, I found them nearly impossible to put into practice. Now that I'm sick, I find it just as impossible to not rely heavily upon them.

The literal translation of "the Tao" is "the Way", the inner path one must travel to find true happiness and contentment. This path can't be defined by outside influences, and is unique to each individual. In fact, the wisdom contained within cannot be conveyed to you by anybody else, and in that way the Tao, your Tao, is unknowable to all but you. Only by quieting our inner turmoil, and turning down the cacophony of conflicting thoughts, emotions and desires, can we come to an understanding of our own personal path to fulfillment. We carry within us all that we need to be happy despite the chaos ricocheting around us, and if we can only learn to listen to these inner whispers we can undertake the necessary steps to create our own contented reality.

We are taught very early on that taking action, almost any action, should always be the goal, and the heroes in our society are always those whose actions speak the loudest. But the deeper truth is that sometimes more can be accomplished by inaction rather than action, an idea that might seem incongruous, at first glance.

The flow of life can be likened to a raging river, and too many of us spend our lives constantly trying to swim upstream, valiantly but hopelessly fighting the natural flow of our own lives, sometimes to the point of drowning, in a desperate attempt to reach what we have been led to believe is material and personal "success". If time and effort is spent putting aside those frantic efforts, and we quiet down long enough to discern the true direction in which life wants to lead us, the wise come to understand that by simply floating on their backs and relinquishing the struggle, they will finally reach their destination, a truer more fulfilling destination, and thus avoid the misery, heartache and inevitable discontent born of the perpetual battle.

Many Taoist lessons are taught through parable, and my favorite of these was first related by the ancient Tao Master, Chuang-tzu:

“There was a man who disliked seeing his footprints and his shadow. He decided to escape from them, and began to run. But as he ran along, more footprints appeared, while his shadow easily kept up with him. Thinking he must be going too slowly, he ran faster and faster without stopping, until he finally collapsed from exhaustion and died.

What a fool.

If he had stood still, there would have been no footprints. If he had rested in the shade, his shadow would have disappeared.”

I've been aware of this parable for at least two decades, and was always struck by the simplicity and profundity of its wisdom. Now, afflicted with MS, its message has taken on immense new dimensions. My footprints are now tire tracks, and when I see my shadow I'm somehow still always shocked to see that the silhouette I make is no longer that of the strapping 6 footer I once was, but instead is that of a man in a wheelchair. MS has erased my footprints, and forced me to sit at rest. This reality is inescapable no matter how frantic my efforts, and running away is quite literally no longer an option.

The way, then, is to find the contentment within that eclipses physical disability, and to make the infinite number of choices each and every day that allow for that contentment. I will never be happy about having multiple sclerosis, but I can be happy in spite of it. My efforts to combat the disease will never cease, but in the tradition of the ancient warrior, my efforts to battle the illness are best born from tranquility and quiet determination, and not from the turmoil of desperation.

In the end, when pondering the imponderable, we simply must learn to let it be.

Let it be.

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