Friday, July 31, 2009

Toyota Develops Mind Controlled Wheelchair

Well, this is pretty amazing. The big brains at Toyota have developed a wheelchair that is operated through the power of the mind. By reading the user's brain waves, the chair can decipher the direction the user wants to travel.

As huge an advance as this might be, I can foresee problems with this technology in the future. There I'll be, happily zipping down the street on my mind controlled way, when an especially short miniskirt, a Lamborghini, or a particularly cute Labrador Retriever passes me by. Suddenly, the chair starts whirling like a dervish, and soon launches me directly into traffic or through a plate glass window. Given my propensity for daydreaming, I might set out for a doctor appointment, and wind up in the Gobi desert...

I know my mind, and believe me, it's not to be trusted to follow a straight line for more than 30 seconds.

Thursday, July 30, 2009

Barking up the Wrong Tree...

barking up the wrong treeImage by iammikeb via Flickr

A promising experimental MS drug, targeted at patients with progressive disease, has failed its late stage trials. The drug, Dirucotide, was reported to have shown remarkable effectiveness in early-stage trials, and, as there are very limited treatment options for those with progressive MS, much anticipation accompanied the compound's hoped for success. To put it bluntly, the fact that this drug failed really sucks.

Dirucotide was designed to work by restoring a patient's immunological balance, thereby suppressing the immune attack that is supposedly behind the MS disease process. Its failure highlights two important points; first, that early stage trial results can be very misleading, and second, that perhaps it's time to look beyond tinkering with the immune system when searching for answers to the MS puzzle.

My neurologist has been warning me for years to take all published early-stage trial results with several grains of salt. More often than not, there are financial motivations behind their release; in the case of large public companies, to drive up stock prices, and in the case of smaller, private companies, to attract investor cash. One must never forget the power of the almighty dollar.

The unfortunate reality is that Multiple Sclerosis has become a multibillion dollar a year industry, and competition among competing drug manufacturers is intense. Stock prices rise and fall on bits of news and hints of future success or failure, and pharmaceutical companies provide a steady stream of positive information designed to pique investor interest. Dirucotide, for instance, was initially developed by a small biotech company, BioMS. After the drug's success in early trials, pharmaceutical giant Eli Lilly stepped in to partner with BioMS for the much larger late stage studies. Unfortunately, both companies were burned by the false optimism generated by the drug’s early positive results. This is not to say that those results were deliberately misleading, but they were put to very good use by the PR folks.

Virtually every MS drug on the market seeks to either modulate or suppress the immune system. According to the autoimmune theory that now dominates MS research, an aberrant immune response during which a patient's immune cells attack their own nerve tissue is the driving force behind the disease. Therefore, logic dictates that suppressing this immune attack should alleviate the ravages of the MS. One must simply get the body to stop disrespecting itself.

In patients with Relapsing Remitting Multiple Sclerosis, who exhibit high levels of inflammation in their central nervous systems, this approach has seen success, as is evidenced by reduced relapse rates and improved MRI images. In patients that eventually transition to or start out with progressive disease, in which there is typically very little evidence of inflammation, these therapeutic approaches have proven to have little or no value.

Left untreated, the vast majority of RRMS patients eventually transition to the progressive form of the disease. Even when treated, it's not clear that today's MS drugs do more than just delay this transition. Once a patient has transitioned to the progressive form of MS, drugs targeted at the immune system have proven to be virtually useless in arresting disability progression. Given that fact, it seems to me to that the immune response targeted by all current MS drugs is more a symptom of the disease than its cause.

In my mind, treating MS by suppressing the immune system is like treating a broken leg with painkillers. The patient stops hurting, but nothing is done to address the underlying cause of the pain. Of course, this analogy is a bit simplistic, as treating a broken leg with painkillers has no actual therapeutic value, whereas immunosuppression and modulation in RRMS patients has been shown to have more than cosmetic effect.

Still, the fact remains that there is some unknown factor driving the Multiple Sclerosis engine, a factor which continues to damage nerve tissue after the hallmark immune response subsides. Might it not be that the immune response seen in MS patients is not an attack directed at their own tissue at all, but is an overwrought and hyper-aggressive attempt by the body to respond to an as yet undiscovered "X factor"? Unfortunately, very little privately funded research is targeted at discovering what this hidden culprit might be.

Virtually every drug now being developed to treat MS is meant to either suppress or modulate the human immune system. Over 70% of medical research in the United States is funded by publicly traded pharmaceutical companies, whose legal mandate states that they are beholden to their stockholders, not to the patients taking their drugs. The job of a pharmaceutical company CEO is to increase his company's profits, and thus the price of its stock. Once again, it's all about the money, honey. When there are billions of dollars being made by marketing drugs that only marginally address the root cause of serious illnesses, the profit motive runs counter to the desire to find cures. To their credit, the drug companies have managed to develop products that have turned previously fatal diseases such as diabetes and AIDS into chronic illnesses, but this success has also served to make the victims of these diseases lifelong consumers of highly profitable pharmaceutical products.

I'll end with a plea to the MS researchers of the world: Please, please, stop focusing solely on the immune component of the Multiple Sclerosis disease process, and instead set your sights on whatever it is that might be destroying a patient's nervous system, or might be the root cause of a patient's immune system going on the attack.

Folks, it's time to start digging a little deeper...

Monday, July 27, 2009

Help Yourself...

A statue of Asclepius. The Glypotek, Copenhagen.Image via Wikipedia

As a patient dealing with a chronic, debilitating illness, it's of the utmost importance that you take control of your own journey through the healthcare system. It's very easy to just throw up your hands and leave your fate to the doctors in whom you entrust your care, but I've slowly learned that by doing so you run the risk of getting lost within the system.

We all would like to think that we are our doctors’ star patient, constantly at the forefront of their minds. Unfortunately, this is simply not realistic. Medicine is a business, and, as practiced in the United States, is a volume business at that. As well meaning as our physicians and their staff might be, the fact is that every year they see hundreds if not thousands of patients. During the time that you are in their office, on their examination table, you can expect to command your doctor’s full attention, but as soon as you leave the office they must invariably turn that attention to the next patient. This is not an indictment of physicians, the overwhelming majority of whom strive to be the very best healers they can possibly be, but human nature is human nature, and a person has only so much attention to give.

Multiple sclerosis, like other chronic degenerative diseases, is a very complicated illness, one whose cause remains unclear, and whose treatments, and their effectiveness, vary widely from patient to patient. Therefore, it is vitally important that each patient maintain a clear understanding of their own particular case history, and educate themselves as best they can about the nature of their own disease. Nobody would expect a patient to comprehend the complex biology of nervous system disorders, but at the very least, a responsible patient should arm themselves with a complete knowledge of their treatment options, maintain complete files of their test results, and understand the idiosyncrasies of their own case.

Both on the Internet and in real life, I've run into far too many patients who are woefully ill-informed about the sickness that might cripple them, and who therefore don't give themselves the best chance at fighting the disease. A few years ago, I spent a week in a rehab hospital undergoing intense physical therapy. I was shocked at how many of my fellow MS patients at this facility were sadly unaware of the basics of their disease and the treatment options available to them. Some of these patients had made repeated visits to the hospital to undergo rehab, yet had only the scantest knowledge of what MS was doing to their bodies, and of the therapy options available to them. Some were in a form of denial, but it seemed that some had simply never thought to empower themselves with knowledge, instead expecting their doctors to provide them with any and all information they might need, and to make their treatment decisions for them. Certainly, a patient should never be their own doctor, but forming a partnership with your doctor is crucial in fighting a disease like multiple sclerosis.

The need for self advocacy also holds true when dealing with the staff of a doctor's office or clinic. At many large treatment centers, there are many layers of administrators and nurses between the doctor and the patient. Some offices are more efficient than others, and sometimes phone calls are not returned, messages do not get through, and test results are poorly communicated, leaving the patient in the uncomfortable limbo of waiting for a response that might never come. In these cases, there's a thin line between persistence and being a complete pain in the ass, and that line, when crossed, is entirely counterproductive.

There have been times when I've literally sat staring at the phone, anguishing over whether I should make yet another phone call to a physician's office, in the hopes of getting a much needed answer or anticipated test result. There is no ready number to how many phone calls is too many phone calls, or how much time spent waiting is too much time spent waiting, and each situation requires a judgment to be made on the part of the patient. Despite such occasional frustrations, I try to make it a rule to always be polite in my communications with office staff, and to let staff members know how truly thankful I am to them when they do provide help and assistance.

Although one invariably runs into the occasional bad egg, most clinic personnel are well-meaning and hard-working individuals, and any lack of responsiveness on their part is more often than not an indicator of just how busy, and sometimes overwhelmed, they are. Just as you never want to piss off a waiter, who might spit in your food, you should try to play nice with the staff of your doctor's office, because quite often you'll spend more time talking to them than to the doctors themselves. And, really, what's the point of being an asshole?

So, educate yourselves constantly, keep extensive documentation of all test results and office visits, and despite your frustrations, try to be nice. Above all, don't be afraid to take responsibility for your own well-being.

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Wednesday, July 22, 2009

Please, Check Your Meds!

Resized image of Ritalin-SR-20mg-full.png; squ...Image via Wikipedia

As a patient dealing with chronic illness, I regularly visit a number of doctors, each of whom prescribes for me a variety of pharmaceutical concoctions. Along with my primary neurologist, I see a primary care physician, a urologist, a neuro ophthalmologist, an endocrinologist, and a pain management specialist. Each of these MDs makes good use of their prescription pads, and subsequently I have enough pharmaceuticals in my bathroom to open my own apothecary.

I'm sure this delights the hell out of the big pharmaceutical companies, who rival insurance companies and the New York Yankees on my list of most detested entities on Earth (one of these days, I'll post a long and barely coherent rant about Big Pharma and its rancid influence on the healing professions), but it's left me with literally handfuls of pills to take each day.

As I'm chugging down these little vessels of wonderfulness, in their dizzying array of different shapes, sizes, and colors, I often wonder if they might be doing me more harm than good. I mean, here I am, in possession of a finely balanced symphony of physiology, a body that has taken millions of years of evolution to develop, and I'm two or three times daily ingesting substances that profoundly manipulate the workings of many of its systems. Of course, in my case, evolution as provided me with a body that probably should have been recalled, but that's besides the point. A little research into many pharmaceuticals reveals that their mechanisms of action are poorly understood, other than the fact that they appear to work. Kind of like magic; here's a quarter, now it's gone, except it's not really gone, now is it?

On their own, each of the pills we take may be beneficial, or at least not harmful, but when taken in addition to other medications, serious consequences can result. Drug interactions are a significant cause of death in this country, and as responsible patients we shouldn't rely on our doctors to keep track of each and every prescription that has been given to us.

There is a terrific website, provided by, which allows you to enter the names of all of the prescription medications you're taking, and then alerts you to any possible problems with drug interactions. The site even allows you to save your list of drugs, so you can add to it the next time you're given a prescription. I urge everybody reading this post to please, please visit this website and check your medications. I did so yesterday, and was alerted to a possibly severe interaction between two of the drugs I'm currently taking.

So, if not for yourself, do it for the Wheelchair Kamikaze. I can't afford to lose any readers. Click this link and check all of your medications.

Really, do it now.

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Monday, July 20, 2009

Frank McCourt, Noted Author and My High School English Teacher, Dead at 78

Frank McCourtImage via Wikipedia

Frank McCourt died today, after developing meningitis while struggling with melanoma.

Mr. McCourt won the Pulitzer Prize for his memoir "Angela's Ashes", but more importantly (to me, anyway), about two decades previous to his receiving literary accolades, he was my high school English teacher. I had him for two semesters, once in my sophomore year, and then again as a senior.

To say that his classes were a little offbeat would be a serious understatement. More often than not, Mr. McCourt, sporting bloodshot eyes and the faintest whiff of last night's pub, would conduct a monologue about the vicissitudes of life and the various lessons he had or hadn't learned from them, in his always witty and heartfelt Irish brogue. He'd go on little tirades about how his bankrupt brother could get credit cards but he couldn't, or how the historically recent notion of "falling in love", with its likening of romantic attachment to some cosmic dog shit that one accidentally steps in, has led human beings to plumb the depths of misery...

When the class's attentions actually did turn to the study of English, we would often read Mimi Sheraton's restaurant reviews in the New York Times, the prose of which could transport Mr. McCourt to a state of rapturous joy. It wasn't until I read Angela's Ashes nearly 20 years later, that I understood his fixation on Ms. Sheraton's columns. He'd grown up quite literally starving, and the eloquent superlatives lavished on edibles by Mimi Sheraton must have put words to his own lifelong fascination with food.

When I mentally time travel back to high school, I often find myself sitting in Frank McCourt's classroom.

He was my favorite teacher.

Rest in peace, Mr. McCourt...

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Monday, July 13, 2009

The Problem with Progression

Staircase in Vatican Museum.

Of late, the MS has been giving me a pretty good ass whuppin'. It's getting harder for me to stumble around my apartment, and I'm pretty close to making the decision to start using my wheelchair for indoor as well as outdoor mobility. Up until now, I've used the chair exclusively for my travels through the beehive of streets in New York, but now the uncomfortable realization is hitting that I also need it for excursions from the bedroom to the kitchen. It looks as if the progression of my disease is about to force me to crash through yet another psychological barrier.

During my first visit to an MS specialist, I remember the doctor going on about "stopping the progression of the disease". I was new to the world of MS, my head was spinning with thoughts of "spinal lesions", "lumbar punctures", and "brain MRIs", and I simply could not process what he was talking about. Progression? What the hell is progression? I have a little limp in my right leg, upsetting yes, but hardly the end of the world...

Well, now I'm all too well aware of the meaning of progression. In six years, that little limp has reached out and put a choke hold on much of the rest of my body, and try as I might, I just can't seem to wriggle free. I could list a litany of my defective body parts, but what's the point? It would most likely just need to be updated again next week. Each new day seems to bring with it a changing set of circumstances, and unfortunately, those changes don't ever seem to be for the better.

To state the obvious, the problem with progressive neurologic disease is that it progresses. Little by little, you lose yourself to your illness. As great a toll as this progression takes on the physical body, the psychological impact of watching yourself whither away over weeks and months and years cannot be overstated. Back in the dark ages of my MS experience, I'd sit in the neurologist’s waiting room and see other patients in their wheelchairs and scooters, and thank the heavens that I was not one of them. Of course, I knew that they did not just one day materialize disabled, and that they had arrived at their current physical conditions incrementally, over time. I just couldn't fathom that I would follow the same road. I'd look at those poor souls, my mind would reel, deliberately set me apart from them, and quickly force my attentions elsewhere.

Now, I'm the guy sitting in that waiting room in a wheelchair, and I can see the less disabled patients looking at me through familiar eyes. I make it a point not to appear dour or downtrodden, and I'm always quick with a wisecrack or two, but I know too well the quiet horror they are feeling. Truth be told, they are not wrong in feeling it. As good a spin as you can put on it, as upbeat and determined as you might be in the face of it, the prospect of doing battle with an insidious enemy that slowly swallows you from the inside out is a perfect example of why human beings come equipped with a healthy capacity for denial.

No matter what stage of the disease you're in, peering forward carries with it an element of dread. The endless road of progression, if left unchecked, must ultimately lead to an extremely ugly place. Along the way there are milestones to be reached; the first time you can no longer climb a flight of stairs, the first cane, the realization that you can no longer sign your name.

At first I measured the disease’s progressive toll in the slowly shrinking distances I could walk, first in miles, then blocks, then yards, and now feet. Every holiday and special event has become a psychological landmark, a yearly milestone from which I can look back to the same moment in previous years and assess just how much I've lost, while simultaneously wondering about the scope of the wreckage I'll be dealing with in another year’s time. Will this Super Bowl be the last that I can watch from a couch that I've walked to under my own power? Or the last that I will be able to feed myself chips and dip? Or the last that I'll be able to manipulate the remote control? Or, simply, the last?

Ongoing disease progression leaves us little time to mourn the losses we've suffered. If one were to literally lose a leg, as horrible as that would be, the trauma could be experienced, mourned, and then adapted to, leaving a person in a state of permanence, albeit an unfortunate one. With progressive illness, the losses just keep mounting, and life becomes a constant exercise in adaptation. I haven't had the chance to fully mourn the loss of the use of my right hand, because I'm aware that my left appears to be following suit. I watch people happily strolling through the park, and feel a deep yearning, but that yearning is shadowed by the apprehension of insults yet to come. As layer upon layer of disability piles up, the process of mourning any single loss gets overwhelmed by the sheer volume of them all.

Strangely, and thankfully, I've found that the reality of each new stage of disability does not approach the horror that accompanied the anticipation of it. Back in the days before my illness, I'd have never thought I'd have the capacity to adapt to the level of disability I'm now experiencing. I once would have categorized the possibility of my being forced to rely on a wheelchair as unthinkable, but when that moment arrived, the world somehow kept spinning. The loss of functionality in my right arm and hand has led me to learn how to do things with my left, and through all manner of adaptations, I've managed to maintain an acceptable quality of life. So far, at least, the realities of encroaching disability have not been as ghastly as I'd imagined they would be. I am constantly aware, though, that there will come a tipping point, when even the barest illusion of normalcy will disintegrate under the weight of some new undeniable reality.

Of course, I am not without hope. Even without intervention, MS is an unpredictable beast, and patients with the most aggressive forms can sometimes find themselves reaching plateaus for years at a time. Medical research is shedding new light on the disease on an almost daily basis, and the promise of stem cells to repair damaged nerve tissue is steadily moving closer to becoming a reality. Trials of neuroprotective agents are currently underway, and radical new theories about the very nature of multiple sclerosis are finally being given proper scientific scrutiny.

Still, though, the disease marches on, the struggles become harder, and, with the help of friends and loved ones, the best we can do is strive to stay rooted in the moment...

Friday, July 10, 2009

Get Involved! Support Creating a National MS Registry...

18F PET scan shows decreased dopamine activity...Image via Wikipedia

Okay, fellow MS people (and those who love us), here's a chance to have your voices heard by the powers that be in Washington. The National Multiple Sclerosis Society is organizing an e-mail campaign urging the passage of The National MS and Parkinson's Disease Registries Act, which would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.

Believe it or not, the last time a national study on the incidence and prevalence of multiple sclerosis in the United States was conducted was way back in 1975. A lot more than hairstyles and the width of lapels has changed since then, and a new study could shed light on a wide range of issues impacting the research and treatment of our shared enemy, multiple sclerosis.

The NMSS has made it easy to get involved. Simply click on this sentence to navigate to a webpage that they've devoted to the cause, which will allow you, with a few simple clicks of the mouse, to send e-mails in support of this important legislation to your senators and congressmen. While you're at it, you can sign up to become an "MS activist", and become involved in all of the Society's efforts to lobby on behalf of MS patients nationwide.

So, say it loud: I have MS, I'm mad as hell, and I'm not going to take it anymore! Take action and help yourself while you're helping others...

We may be gimpy, but we ain't wimpy...
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Monday, July 6, 2009

The Un-Comfort Zone

Black-headed Spider Monkey (Ateles fusciceps)Image via Wikipedia

My recent trip down to Bethesda, MD really accentuated just how disabled I've become. Placed in unfamiliar surroundings, the veneer of normalcy that I cocoon myself in at home quickly comes apart at the seams.

Not that I'm waltzing around my apartment with the dexterity of a spider monkey, but I've incorporated all kinds of workarounds and improvisations into my everyday life that allow me to do the things I need to do. If I'm alone, or with my wife, beyond the view of outsiders, the fact that a caffeinated snail could beat me in a foot race has simply become an accepted fact of life. I know it, my wife knows it, and life goes on...

As my level of disability has gradually increased, though, my efforts to remain functional have led me to develop ever more elaborate choreographies. Getting into the bathroom now requires an intricate series of clumsy maneuvers. Once I've reached the threshold of the loo, my "good" left hand, holding my cane, reaches in and flicks on the light switch. Then, with one foot on the tiled bathroom floor, I hang the cane on the towel rack, and my now empty left hand grabs at the doorknob for balance. Using the knob as a fulcrum, I stumble into the bathroom, and then swing the door shut, in one motion releasing the knob and then frantically reaching towards the sink for support. My every move requires some sort of compensatory action to get around the fact that my right side is completely uncooperative, but over time, and with repetition, these actions have become more or less routine.

Likewise, getting around my neighborhood in my power chair now seems commonplace. The road map in my head is aware of which curb cuts are suicidal, which sidewalks are pockmarked battlefields, and which routes provide the least bone jarring path to my usual destinations. After using the chair around the neighborhood for a year, these calculations have all become automatic.

Take me out of the familiar, though, and I'm increasingly helpless, as our recent trip down south unnervingly demonstrated. Making a highway rest stop is now anything but restful. Once parked, I slowly and painfully unfold my obstinate legs and drag myself out of of the car. Karen pulls out the collapsible manual wheelchair we use when traveling, and sets it a step or two from the passenger side car door. Using the roof of the car for balance, I pivot and then plop myself into the chair. My fate now rests entirely in Karen's hands. I have been rendered a wisecracking blob of flesh and bone.

I confess, I detest the manual chair. The power chair can be a hoot, and as I've mentioned in other posts, I almost feel like it gives me superpowers. Karen sometimes even hitches rides on the back of it, when we're traveling long distances over reasonably smooth pavement, much to the amusement of passersby. The manual chair, on the other hand, makes me feel about as useful as a pile of manure in a wheelbarrow. I've tried to make the best of it, sometimes shouting, "Mush, mush, onward Huskies!” (much to Karen's chagrin), but let's face it, you can't polish a turd.

Once arrived inside the rest stop building, attempting to use the men's room has become an act of pathetic derring-do. As the other fellas enter and exit the facility with various degrees of urgency, there I am doing a slothlike wobbling shuffle, gripping my cane with white knuckles as I desperately try to avoid any wet spots and discarded paper towels on the tiled floor. What used to be just a quick stop for a pee is now a nerve-racking trek through a not-so-funhouse filled with potential hazards.

The same can be said for navigating supposedly "accessible" hotel rooms. In my experience, most are "accessible" in name only, having gained that designation through the implementation of mandated modifications made without any thought given whatsoever to real-life usability. The shared tile between the bathroom floor and the roll in shower is usually silky smooth and becomes a skating rink when wet, shower seats are often installed as far from the actual showerhead as is architecturally possible, and handrails are attached in what appear to be abstract impressionist patterns.

Whereas at home I know my workarounds by heart, when confronted with a new layout, my every move requires planning and consideration. Going about even the simplest task is physically exhausting and mentally taxing. Weaving between thoughts of "Hmm, should I grab the wall and then the edge of the dresser?", are internal exclamations of "Holy crap! I am an honest-to-goodness cripple!”

Away from my home base, my carefully crafted illusion of normalcy gets stripped naked, and exposes my true state of vulnerability not only to the world outside, but most disconcertingly, to me. Assuming the persona of the Wheelchair Kamikaze is therapeutic; the reality of being the "Going to the Men's Room Kamikaze" is anything but.

Still, one day follows another, and we learn to suck it up and force or fake our way through. It's incredible what a person can get used to, isn't it?

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