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

Continuing with my cavalcade of MS treatment shenanigans...

Methotrexate: Next on the hit parade came methotrexate, a chemotherapy drug (i.e poison) that suppresses the immune system. Methotrexate was originally used to treat cancers, but over the years it's been found to be effective on some autoimmune diseases. The drug is most often taken orally or intravenously, but my neurologist, Dr. Big Brain, prefers to use it intrathecally. Intrathecally means that it's delivered directly into the spinal column, by way of, you guessed it, a spinal tap. Well, really kind of a reverse spinal tap, because instead of taking stuff out, they put stuff in. Either way, it's a needle in the spine. Dr. Big Brain has had much success with hard to treat progressive multiple sclerosis cases using intrathecal methotrexate. I had no such luck though, because my multiple sclerosis insists on sucking great big fat hairy monkey balls. Through the years I've have had a total of eight injections of methotrexate directly into my spine, to no apparent benefit. Hooray for me.

IV Solumedrol: Solu-Medrol is a corticosteroid, commonly given intravenously to RRMS (Relapsing Remitting Multiple Sclerosis) patients for 3 to 5 days, to shorten the duration of MS relapses. Steroids are very powerful anti-inflammatories, and MS relapses appear to be set off by a dramatic increase of inflammation in the central nervous system.

I have PPMS (Primary Progressive Multiple Sclerosis), though. Traditionally, steroids are not thought to do much for PPMS, because progressive MS isn't primarily inflammatory in nature. Instead, some other insidious, mysterious action is at work damaging and killing nerve cells in the brain and spine of PPMS patients. I'm pretty sure this mysterious cause is, at least in my case, an extremely resilient strain of cooties. Back in the fourth grade, I defied conventional wisdom and did not get my cootie shots after I accidentally brushed up against Weird Henry, and now, 35 years later, I'm paying the price.

In the spring of 2006 I had sinus surgery, and afterwards my MS symptoms went into overdrive. I really thought I might be dying. Dr. Big Brain decided to pull out all the stops, and ordered a 10 day course of IV steroids for me, and sent me to the Helen Hayes Rehab Hospital in Rockland County, New York.

Much to the surprise of everybody involved, I responded dramatically to the steroids. After the third day, I started regaining function in my weak right side that I hadn't had in at least six months. Naturally, I was thrilled. You don't realize how much you'll miss being able to use a knife and fork until you can no longer use a knife and fork.

The experience of being on intravenous steroids for 10 days was quite intense. I managed to get about two hours of sleep a night, and that's with the help of chemicals. I wanted to eat anything that came within 5 feet of me, rocks, bugs, and assorted plastic bits included. If my beloved Red Sox would have signed me, I am positive I would've hit 362 home runs during those 10 days.

Unfortunately, the benefits from the steroids proved to be sadly temporary, and only lasted about three or four months. Really, really unfortunately, my extended stint on intravenous steroids led to my getting Avascular Necrosis, a rare side effect of the drugs, about six months after completing the steroid treatments. AVN is a condition in which the blood supply to the bones in your joints is cut off, leading to the death those bones. I have the condition in both shoulders and both hips, which now often feel as if they're made of razor blades. If I were healthy, I would have already had two total hip replacements. Since I'm in no shape to undergo the surgeries and subsequent rehab, I'm left with hips and shoulders that vacillate between intense pain and "holy crap I can't believe how much this fracking hurts crap crap crap" pain. Take my advice, don't get Avascular Necrosis.

To Be Continued...

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

It's incredible to think that six years ago I didn't know a spinal tap from a beer tap, and if asked, I would have probably guessed that an interferon was a creature from the planet Interfero. My everyday vocabulary was blissfully lacking words such as spasticity, paresis, enhancing lesion, cervical spine, monoclonal antibody, immunosuppression, and myelopathy. As much as I enjoy learning new things, I really would have much preferred being forced to learn firsthand the arcane jargon of, say, "fabulous wealth" rather than "multiple sclerosis"...

I've undergone about 1 billion different procedures and treatments since my diagnosis, and I thought it might be helpful to folks if I related some of my experiences. So, here's a rundown of what I've been through, along with a bit of commentary:

Magnetic Resonance Imaging (MRI): MRIs provide a way for doctors to take a gander of what's going on inside your skull and spine, without resorting to the use of saws and scalpels. It's a noninvasive procedure, but does involve being fed into a very narrow tube (think: coffin) within a gigantic machine, for periods sometimes in excess of one hour. The MRI machine makes extremely loud whirring, clanking, and clunking noises while in operation. Some patients absolutely freak out when in the MRI, due to anxiety fueled claustrophobia. Me, I usually fall sleep. Something about the sterility and isolation of "the tube" and the repetitive industrial noises are kind of hypnotizing, and usually have me examining the inside of my eyelids within a few minutes.

Lumbar Puncture (Spinal Tap): Just the phrase "spinal tap" is enough to make even some of the most stalwart patients need an immediate change of trousers. Believe it or not, I've had at least a dozen spine piercing procedures of one sort or another, and honestly, I've found them to be no big deal. I wouldn't recommend them as a recreational activity, but as far as medieval sounding medical procedures go, I think I prefer getting a spinal tap to having a tooth drilled. There is a little burning pinch when they numb up the area in preparation for the jab, but the jab itself is painless. Thankfully, I've never experienced the dreaded "spinal tap" headache, a side effect that can be caused by a drop in spinal fluid pressure due to leakage from the spinal column in the days following the puncture. The pain from such a headache is supposed to be otherworldly, so my opinion of lumbar punctures might be quite different if I'd experienced one.

Rebif: Commonly referred to by those who take it as "Rebarf", Rebif is one of the interferon drugs given to patients in the hopes of cutting down on relapses and slowing the progression of their MS. It's only effective for RRMS (I have PPMS, which means no relapses), and is thought to work by modulating the patient's immune system. I was put on it immediately after my diagnosis, before it was clear that my disease was strictly progressive. Rebif is an injectable drug, requiring those taking it to shoot themselves up every other day. Being neither a masochist or a junkie, the whole self injecting thing was very unsettling, but after the first few times, sticking myself with needles became kind of ho-hum. It's amazing what you can get used to. The worst part about Rebarf was the flulike symptoms that are a common side effect of the interferon drugs. Given the every other day dosing, this meant dealing with chills, aches, and nausea the day after each injection, three times a week. Rebarf did nothing for me, and I was very happy to be taken off it once it became clear that my MS was progressive.

To Be Continued

MS and Me: A Life Bisected, and Dissected - Part Three

Given my newfound appreciation for the value of time, when I looked back on my healthy life I was aghast at how much of it I'd wasted on negative emotions and self-defeating actions. I lost irretrievable, irreplaceable days and weeks and months and years spent depressed, or resentful, or distracted, or obsessed, time that I will never get back, ever.

Rather than burning a torch for some lost love, or agonizing over life's many disappointments, I could have been making the difficult changes needed to generate my own joy. Instead, I chose to allow myself to wallow in despair, embracing it with the fervor of a suicide bomber.

Incredibly, all of those nights I spent sitting on the couch with my head in my hands only accomplished one thing, putting a dent in the cushions. In fact, all that emotional turmoil served only to make the situations I anguished over worse. What woman wants to return to a man who has dissolved into blubbering goo at her leaving him? What problem has ever been solved by a soul consumed with gloom? Eventually, simple self-preservation forced me to let go, each time surprised to find that I had somehow survived the wreckage.

I now know that my relief could have come much sooner, at any time I made the conscious choice to simply let go. What kept me hanging on was an odd mix of ego and insecurity, my ego not wanting to admit that any such disaster could befall a person as wonderful as me, and my insecurities afraid that said disaster only confirmed what a sap I really was..

Of course, heartbreak and disappointment will always hurt, and that hurt must be experienced. But prolonging the pain, and feeding on it, serves only to waste time, whose value rises with each passing day. If you were suddenly told that you had only 100 days to live, how many of them would you choose to spend miserable? Ultimately, we've all been given "X" number of days. We don't know what our "X" is, but each day’s passing brings us closer to it.

Every morning we wake up, healthy or not, given the opportunity to remake ourselves. We do not have to let the person we were yesterday define who we are today. The promise of each new dawn can be squandered by repeating patterns and habits that have always held us back, or we can decide that today we will finally treat ourselves with kindness.

This awareness has helped me deal with the hard reality of disability, and with the horror of watching multiple sclerosis gnaw away at me. Each morning, I contemplate my situation, confirm which body parts are working, acknowledge that it all sucks incredibly hard, and then work up the resolve to make the best of my bad situation. Today, the right side of my body is useless, but I am still able to marvel at my incredibly caring and wonderful wife, post to my blog, hobble around my apartment, and get into my wheelchair and make wacky videos. So, today is going to be a good day.

Tomorrow? Well, tomorrow I will go through the whole process all over again...

MS and Me: A Life Bisected, and Dissected - Part Two

When I stopped working and went on disability, I realized that, in a very real way, I had experienced the death of the old able-bodied me, and was left to mull over the life that the old able-bodied me had led. The understanding that my life had been forever changed transformed the recollection of my healthy days into something of a time capsule, my memories like the curious remnants of a lost history.

I untangled the web of decisions and events that had defined the path my life had taken, and saw that many of the issues with which I'd most wrestled had very little actual impact on the direction of my life, while decisions that I'd made with barely a thought, like choosing to catch a later train, or stay for one more drink, or take the long way home, had proven time and again to have tremendous long-term implications. It turned out that many of the issues I thought to be of vital importance at the time were in reality relatively insignificant in the long run, and that issues to which I assigned almost no importance at all had been tremendously influential.

Now that it had been stolen from me, I was immensely struck by how precious a commodity time, healthy time, really is. Forget about gold, diamonds, fame, or power. The ultimate truth is that time is every person's most valuable possession. The fragility of the daily routine is almost impossible to see while you are caught up in it, but the knowledge that all you take for granted can be smashed in an instant should be the driving force behind every life.

I never, ever, expected to be diagnosed with multiple sclerosis at age 39. Me? That shit doesn't happen to me. After all, I'd been a world-class hypochondriac all my life. I'd courageously battled through imaginary bouts of leprosy, stomach cancer, brain tumors, and dengue fever. Didn't that somehow exempt me from getting a real illness? Hadn't I earned a cosmic get out of jail free card for all of my self-imposed misery? Was all that egocentric suffering in vain? Well, jackass, yes it was...

The fact is, none of the thousands of people each day who have their lives completely turned inside out by disease or accident ever had an inkling that their existences were about to be shaken to their roots. It may be trite to say that life should be lived as if each day may be our last, but there is no greater truth in the world.

Given good health, the potential to change one's entire destiny is bestowed upon each and every person the moment they wake up each day. The only influence that the past has on the present is the influence it is granted, and today is the only today you are ever going to get. Disease steals much of that self-determination away from us. Now, the patient is forced to put blinders on and focus on the fight ahead. While yesterday the choices had been infinite, at some point after getting a serious diagnosis, the menu becomes quite limited...

(Click Here for Part Three)

MS and Me: A Life Bisected, and Dissected - Part One

Multiple Sclerosis has quite obviously had its way with me physically, and it keeps hammering away, day in and day out. But it's also had effects on me that aren't as immediately apparent, effects both psychological and philosophical, that have led me to reevaluate some core values and the way I live my life. Dealing with this disease has forced me to recognize insights that I might never have otherwise gained. I'd never say that multiple sclerosis has had a net positive effect on me, because this disease is a nothing but a stinking, rabid dog from Hell, but it has led me to some important and life-changing realizations.

In effect, getting MS divided my life into two very distinct parts; my life before multiple sclerosis, and the time I've spent since, with the most dramatic changes coming when I was forced to stop working and go on disability in 2007. The day I left my office for the last time was a striking line of demarcation between the life I had known, and a new life that would be spent with increasingly limited mobility and an almost unlimited amount of time on my hands.

It's a strange experience, to suddenly be faced with the prospect of days and weeks and months and years with almost nothing to do. There are doctors visits, the requirements of daily living (eating, bathing, obsessing about Wolf Blitzer's name, etc.), and occasional socializing with friends and family, but other than that I've been largely left to my own devices. My wife works 9-to-5, so on weekdays it's basically "we three", me, myself, and I.

In the months immediately following my going on disability, I was thankful to find a very large time eater in the form of "Star Trek: The Next Generation". One of the cable networks was showing three episodes a day, so I spent many hours accompanying Capt. Picard and my other friends from 24th century on their adventures zipping around the universe. Maybe not the most constructive use of my time, but I did manage to develop an ungodly hatred of the Romulans.

Soon enough though, I ran out of Star Trek episodes, and found myself spending time reflecting back on my life before disability. From the vantage point of my newfound idleness, I could look on my previous life as an entity unto itself, with a beginning, middle, and end. Just as a person can't review a movie while in the middle of watching it, it's very difficult to take a broad view of your life while you're in the middle of living it. The self-perpetuating narrative flow of all of the ongoing elements of life keep a person primarily concerned with the present and future. Once on disability, though, my present was only a void to fill, and, given the insidious nature of multiple sclerosis, the future wasn't a place I cared much to think about...

(Click Here for Part Two)

New Drug Reduces Spasticity. Unless You're an American.

Sativex, a drug produced by GW Pharmaceuticals, has been shown to dramatically reduce the effects of spasticity in multiple sclerosis patients. This is great news, because spasticity truly sucks. For those blissfully not in the know, spasticity occurs when MS patient's muscles get the signal to contract, but not to relax, and therefore remain stiff and bent out of shape. Spasticity can be quite painful and extremely debilitating, and if you've ever seen an MS patient with twisted limbs, spasticity is the culprit.

The catch, for US citizens, is that Sativex is derived from the demon weed, marijuana. The ever benevolent Powers That Be here in the good old US of A long ago decided that marijuana, and any of its derivatives, must be kept out of the hands of red-blooded Americans, no matter how effective marijuana-based therapies might prove to be.

The sad truth is that most of the anti-marijuana legislation passed in the mid-20th century was more concerned with protecting the cotton industry than with keeping the minds and bodies of Americans from being polluted by the scourge of "mary jane". Heaven forbid that hemp-based products take a chunk out of cotton profits, and, oh yeah, marijuana will make you into a lustful, sex crazed, violent hophead. The government was only protecting its innocent, corruptible citizens. Hey you, button that cotton shirt, get your mind right, and go have yourself a brewski...

For those people with MS outside of the United States, Sativex should soon be available to ease your spasticity. I believe it's currently available in commie Canada.

Who knows, maybe soon the United States will actually come up with drug laws that make sense. In the meantime, I think I'll try to uncurl my twisted, spastic arm, hand, and fingers, and go smoke a joint...

Click here for info on Sativex

New Wheelchair Kamikaze Video: Bagel Quest

Well, here's the latest edition of my ongoing Wheelchair Kamikaze video series. This time around we head down Broadway to my favorite bagel shop, and then come home via the scenic route, including a trip through Central Park.

Along the way I encounter pet shopping carts, a curb cliff, a human habitrail, and the irrepressible urge to go off-roading. I hope you have as much fun watching it as I had making it...

Neurologist Roulette

A fast scan through the many public MS bulletin boards on the web will quickly reveal that many patients are not only struggling with their MS symptoms, but also with the subpar treatment they're getting from their neurologists. It's absolutely shocking to read report after report of patient's complaints about their treating physicians, with problems ranging from simple inattentiveness on the part of their doctors or the doctor's staff, to instances of stunning incompetence.

Of course, folks who are happy with their neurologists aren't as likely to post publicly about their positive experiences as are patients that are disgruntled with the treatment they're getting. It's simply human nature that the angry and dismayed are much more likely to report on their experiences than those more satisfied. Still, though, it does appear that too many patients are left groping for both understanding and proper treatment by the physicians in whom they've entrusted their care.

My own experiences illustrate the wide range of competence among physicians.

The first doctor I visited specifically about my MS symptoms was a general neurologist who quickly dismissed me as some kind of nut. Dr. Imbecile, as I like to remember her, simply disregarded the MRIs that revealed demyelinated lesions in my brain and spine, and my progressively worsening symptoms. She told me to up my dose of antidepressants, and grudgingly wrote me a prescription for physical therapy. Even after the physical therapist noted marked weakness on my right side, Dr. Imbecile stuck to her grossly incompetent guns.

After several months of this idiocy, I landed an appointment with one of the top MS neurologists in New York City. Upon hearing my tales of Dr. Imbecile, he rolled his eyes and shook his head in disgust. He ordered a new set of MRIs just to confirm his suspicions, and within a week gave me a diagnosis of MS.

This new doctor, Dr. Waytoobusy, was not without his problems though. He was clearly a brilliant researcher and clinician, but he and his clinic were obviously overburdened. It seemed that every time I visited his office, he was seeing about half a dozen patients simultaneously, popping into each examination room for about five minutes, and then leaving to visit with the next patient. He'd make the rounds like this several times, so I'd wind up seeing him for about 20 minutes, split up into five minute chunks.

Being newly diagnosed, I had thousands of questions, not to mention fears, and it was quite disconcerting to have my doctor literally backing out of the room as I scrambled to ask him questions and gain some insight into my disease. When he suggested I go on a disease modifying drug, he unceremoniously gave me four videos to take home with me, so that I could watch them and decide which drug to take. As if I wasn't already confused enough, without having to watch marketing videos put out by the big pharmaceutical companies...

I stuck with this neuro for about a year, and then finally found the neurologist I've been with since 2004, who I affectionately call Dr. Big Brain. I could just as well call him Dr. Big Heart, for he shows true compassion for his patients My first visit with him lasted over two hours, and was followed up two weeks later with another 90 minute visit. Dr. Big Brain is known to be very aggressive in treating MS, and is something of a maverick, but so am I, so things worked out nicely.

Unfortunately, I have a very atypical case of PPMS, which has proven time and time again to be extremely difficult to treat, and despite Dr. Big Brain's best efforts, my symptoms continue to worsen. I'm comfortable, though, that this worsening cannot be attributed to my doctor's lack of attention, or limited medical talents. He might not be the right physician for every MS patient, as some are more cautious than l and want to take things slowly. And certainly, my experiences with him haven't been perfect, as we've chased many blind alleys, there have been a few mistakes, and, well, I'm still getting worse. But any negatives I've experienced with him have been caused by Dr. Big Brain's eagerness to see me get better, not due to a lack of attention or my getting lost in a tremendous patient load.

It's very important that patients with chronic illnesses find doctors that they can be comfortable with for the long haul, because the doctor patient relationship in diseases like multiple sclerosis often lasts for years, and even decades.

There's an interesting website that a friend of mine runs, called MS Neuro Ratings. It's been set up to allow MS patients to leave reviews, both good and bad, about MS doctors they've had experiences with. Although it currently has posts reviewing only a small fraction of the MS neurologist population, the more MS people that post, the more complete the listings will become.

I'm convinced this site could act as an invaluable resource for patients both newly diagnosed and well into their disease course. Give it a look, and if you're so inclined, leave a post about the neuros you've encountered. You'd be doing a tremendous service to your fellow MS patients if you do.

http://www.msneuroratings.com/

A Few More Photos

Here are a few more photos taken with a camera mounted on the arm of my wheelchair.

I've found that using the wheelchair rig seriously hampers "spontaneous" photography, but in a way being forced to work within the limitations of the set up makes me think more about each shot. Since I don't have much use of my right arm, even the act of snapping the shutter takes effort, making for a much more methodical way of shooting. Of course, I'd gladly trade whatever benefits this deliberate new technique provides for the use of my arm, but we've got to play the cards we're dealt...

Click the thumbnail to view a larger image.

A New Low in Drug Research

This kind of stuff gets me really ticked off...

As a sufferer of MS, I, like others struggling with chronic disease, am held in the sway of the big pharmaceutical companies, whether I like it or not. And believe me, despite the benefits many of their products provide, I do not like it.

As public corporate entities, Big Pharma are legally accountable to their shareholders, not to the patients who rely on their products. As our recent economic implosion has shown us, the quest for profit does not always lead corporations, and those who run them, to pursue courses of action that put the public interest before their own.

In the world of Big Pharma, this has led to major drug studies being ghostwritten by corporate hacks, the data included in drug studies to be unabashedly manipulated, and drug studies with negative outcomes to be suppressed and withheld from the FDA and the public during the approval process.

Here's an article from the "Wall Street Journal", a publication not generally known for its muckraking coverage of corporate shenanigans, that details 21 studies that were fabricated by a respected research physician. Of course, the physician involved should suffer unrelenting condemnation, but so too should a system that encourages and rewards researchers for producing positive results, and inherently and insidiously leads to repeated abuses by those who rely on corporate grant money to sustain themselves and their institutions.

With at least half a dozen MS drugs now in late stage development, many of which work by fundamentally changing the functionality of our immune systems, I only hope that the data behind these compounds is repeatedly verified and validated before they are unleashed on the MS patient population.

Let's face it folks, MS has become a multibillion dollar a year industry, and the bean counters look at us as consumers first, and patients second. We must be our own best advocates, and it is contingent upon each of us educate ourselves as best we can in order to make informed decisions in regard to our treatment options.

Click here for the article:

A New Low in Drug Research: 21 Fabricated Studies

Wheelchair Wipeout, Kamikaze Style...

I almost wound up a soprano a few months ago, courtesy my maniacal ways at the helm of the wheelchair. This past January, I took the chair out on an afternoon following a late morning snow. By the time I ventured out, the sidewalks were pretty much cleared of snow, except for a small strip running the length of the sidewalk, close to the curb.

I soon found myself barreling full speed down Amsterdam Ave., as is my habit, when I got stuck behind two teenagers ambling slowly down the block.

Ambling teenagers are the bane of my existence, along with all the members of the "baby carriage mafia"...

I swung out to pass the amblers, a maneuver which took me over the strip of snow running along the edge of sidewalk. Upon hitting the snow, my wheelchair went completely out of control. Still going an all-out 8.5 mph, I slammed into the nearest parking meter, and wound up with the parking meter pole somehow wedged between my legs, stopped only by the front of my seat cushion from turning me into a castrato. Another four inches and I would have had the vasectomy I never wanted... Gulp.

The collision caused an awful metallic racket, and the two kids I was passing came running over, shouting, "Yo! Snap! Mister, Mister, are you okay?". At first I wasn't sure if I was in fact okay, given the precariousness of my position, or rather, the position of the pole.

If it had hit one of my legs straight on, the heavy, concrete anchored steel pole definitely would have crushed bone, flesh, and tendons. How it wound up between my legs, wedged between the wheelchair's foot rest and right front wheel, I really can't figure. My normal riding position has both legs close together in front of me, as if I were sitting on a dining room chair. I must have hit the parking meter at some kind of crazy spinning angle, fortuitously deflecting the pole away from my vital parts.

The accident took place in front of a public housing complex, and some of the folks who were hanging out in front of the buildings came over and helped extricate me and the chair from the parking meter pole. During this delicate operation, an older resident who sounded like Desi Arnaz lectured me on the fact that I needed to stay off the snow and stick to the clear part of the sidewalk. I assured him that his point was abundantly clear.

I was absolutely certain the chair was totaled, but to my surprise, it took a licking and kept on ticking. I was able to get on my way again as soon I rearranged myself and took stock, making sure both the chair and my organs were all still in proper working order.

The two kids I was trying to pass were pretty funny. After they helped get me out of harm's way, they started back up the block while I was checking that all systems were still "go". When I finally got back on my way, I passed them at a pretty good clip once again. The three of us had a good laugh as I zoomed by...

Unfortunately, I didn't have the camera rigged up that day. Now, that would've been one hell of a Wheelchair Kamikaze video...

Not to Get Political or Anything...

Since I waded into the political fray with my stem cell post, here I go again...

I proudly proclaim myself a classic Northeast liberal. While I never thought I'd find myself wholeheartedly agreeing with someone who cut their ideological teeth on the evangelical right, this clip had me standing and cheering.

Well, sitting and cheering, you know, MS and all...

This is a must watch clip...

A Few Wheelchair Photos

No, not photos of wheelchairs, but photos taken from a wheelchair. The camera I use to do the Wheelchair Kamikaze videos is actually a still digital camera that also happens to shoot halfway decent video, and I do a lot of still photography using the same camera/tripod rig.

I was an avid amateur photographer before I got hit with MS, and had to put photography aside for about five years because of the disabilities brought on by the disease. Funny thing is, while I tried my damnedest to stay out of a wheelchair, using all manner of braces and canes, I was physically unable to operate a camera. Once I finally agreed to get the wheelchair, I was able to once again pursue my photography passion. Since I got a camera with a flip out viewscreen and a flexible tripod as gifts this past Christmas, I've been able to start shooting again. I think there might be a little lesson in there for us all...

And that lesson is, of course, to always ask for really good stuff for Christmas...

Here are a few of the photos I've recently taken. Click on the thumbnails for a larger view...

Obama to Lift Embryonic Stem Cell Funding Ban

This Monday, President Obama will lift the nearly 8-year-old ban on federal funding for embryonic stem cell research.

It's about time. He should have done this on the afternoon he was inaugurated.

Of course, he's had a few other problems to deal with, such as The Great Recession, two wars, and trying to decide what kind of puppy to get, but let's face it, I have a vested interest here.

Quite simply, stem cell therapy offers my best, and, quite possibly, last hope at beating back this fracking disease. I don't expect that stem cells will ever cure MS (but then again who the hell knows, since no one knows what causes MS, so whatever it is, maybe stem cells will cure it), but they very likely will help repair some of the havoc wrought by the disease on MS damaged nervous systems, which for now is good enough for me.

I realize many people are morally opposed to embryonic stem cell research because they believe the destruction of a human embryo is tantamount to the taking of a human life. Quite frankly, if the embryos were five-month-old fetuses, I might agree with them. But the embryos in question here are zygotes, clumps of at most a few dozen cells. In order to be useful for stem cell research, these cells cannot have differentiated into specific types of tissue, such as bone, cardiac, skin, or nerve. In other words, these zygotes bear as much commonality to a human being as a clump of iron ore has to the Golden Gate Bridge.

The "embryos" in question are smaller than the period at the end of this sentence. Most of them are the byproducts of in vitro fertilization, and would literally be thrown away if they weren't used for research. Not using them to advance the cause of medicine and help put an end to scores of horrendous maladies would seem to me to be the greater sin, if sin is the question here.

Furthermore, in an age where cloning has become an everyday reality, any living cell holds within it the potential of becoming a fully formed life. Every time I scratch myself or pick my nose, I'm destroying thousands of such cells. Should those acts be prohibited as well?

Adult stem cell research also holds much promise, as is endlessly pointed out by embryonic stem cell foes. Most serious research scientists, though, say that embryonic stem cells hold by far the greater potential to do good. Many of the much heralded advances in adult stem cell research involve perfecting ways to get adult stem cells to behave like embryonic stem cells. If the same amount of time, money, and sweat equity had been spent researching the use of embryonic stem cells in the USA during the last eight years, rather than on trying to get adult cells to act like embryonic ones, we would be far further along the road of actually using the cells in a clinical setting.There are myriad problems yet to be overcome in using embryonic stem cells, but all we've so far succeeded in doing is wasting the better part of a decade in learning how to solve these problems.

So get to signing whatever it is you need to sign, Mr. Obama. Time's a wasting, as are my nerve cells and my ability to move my muscles. This isn't an exercise in theoretical morality. There are people dying out here, so let's stop fucking around and just get on with it.

MS and Me: In the Beginning

So, how did Multiple Sclerosis and I become such intimates? Unlike most of my other intimates, it wasn't over some cheap booze in a noisy saloon...

The first Saturday of March 2003 was a bitterly cold day, with temperatures in the teens. What better time, I thought, to take my best buddy Labrador Retriever pal Stella (who died two years ago, and who I still miss every day) for a long walk along the Hudson. Unlike my wife, who's literally allergic to cold, harsh weather doesn't really bother me, and Stella absolutely loved it, so off we went.

My dog friend and I walked north along the concrete jogging/biking path that runs along the very west edge of Manhattan, taking in the stark beauty of the river in winter, for about 1 1/2 miles until we got to 89th St., where we went up to street level and I took some photos of the The Soldiers and Sailors Monument. Stella was her usual goofy self, I was my usual goofy self, and all seemed well.

We started heading back home down Riverside Drive, when I realized that my right knee was kind of buckling backwards with every step I took. At first I thought this was just a result of the cobblestones we were walking on, but then we reached flat ground, and the strange buckling continued. I remember thinking, "OK, this is interesting, what could cause this? Most likely, a brain tumor or Multiple Sclerosis.".

Honestly, within 30 seconds of noticing I was limping, the possibility of MS was forefront in my mind. Can't really explain why, other than a lifetime of finely hewn hypochondria, which I can now proudly say was not a sign of neuroses, but of prescience...

Stella and I walked home, and my limp grew worse. When we got back to the apartment, I rested for a while, and everything returned to normal. Over the next several weeks, though, my knee would start buckling whenever I walked a significant distance, and that distance seemed to get shorter with every incident. I also noticed that my right arm was feeling strangely tired, kind of like I had just pitched nine innings.

After three or four weeks, I went to my primary care doctor, who assured me that my symptoms were most likely nothing, but he ordered an MRI just to be on the safe side.

When I returned for a follow-up visit two weeks later, my condition was the same, if not a little worse, and the doctor hadn't yet read the radiology report from my MRI. He started reading it out loud in front of me, as if he were certain there would be nothing significant in the report. He stopped when he reached the words "a region of probable demyelination". He looked at me over the pages of the report, and I said "Multiple Sclerosis". He looked a little ashen, and said, "Yes, probably...".

And so it began.

Almost exactly 6 years later, my right arm and leg are pretty much useless, both very weak and spastic. My left side, which was untouched by the disease for the first five or so years of my illness, is now starting to show significant symptoms as well, in the form of weakness, numbness, and tingling.

During these last six years, I've learned a lot, not only about medicine and medical research, but most strikingly, about myself and the things that matter most in this finite life. I look back on my healthy years and think about all of the wasted time spent being depressed or angry or anxious or distracted or preoccupied over things that, in the harsh light of real trouble, turn out to be of absurdly little importance.

More on the experiences and knowledge gained over the last six years in later posts...

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Picked for "Photo of the Day"

Along with shooting video from my wheelchair, I also do a lot of still photography, using the same camera and tripod rig. The website "Image Café" just sent me an e-mail informing me that one of my photos was picked as a "Photo of the Day" choice. I'm kind of chuffed...
Photo of the Day
Another of my photos was chosen last month as well:
Older Photo of the Day
Both photos were taken in Central Park, one of my favorite places in the world...

New Wheelchair Kamikaze Video Posted!

Well, I've been at it again, hurtling down the streets of New York City, hell bent for leather.

What the heck does "hell bent for leather" actually mean, anyway? It's one of those expressions that, upon a microsecond of reflection, make absolutely no sense at all. Like "the cat's pajamas". Or "a wild hair up my ass".

I especially hate that last one. Gives me the willies (okay, here we go again, what the hell are "the willies?").

But I digress... for your viewing pleasure, I present "Wheelchair Kamikaze: The Dash down Amsterdam".



Addendum: A big thank you to CW, who posted in the comments section that the correct expression is "a wild hare up my ass", not "a wild hair up my ass". My wife readily confirmed this.

At least now the expression makes a bit more sense, although it doesn't get me liking it any better. Still gives me the willies (anyone want to take a crack at that one?)...

Modern Times, Modern Whines...

In my introductory post, I wrote that I'd been resisting blogging for quite a while, because it didn't really fit with my sense of self. I thought I might expand on that a little...

I'm far from a Luddite, but I do firmly believe that many of our modern technological marvels have done more damage than good to the soul of our society. Do we really need to be "connected" 24 hours a day, seven days a week? Are all those people walking around, oblivious to the world outside of their own heads, with cell phones attached to ears and blackberries attached to thumbs, really so vital that they cannot be out of touch for the three minutes walk between their apartment and the corner store? Will the very world cease to function without their constant monitoring and direction?

Please, unless people commonly refer to you as "Your Royal Highness", put down the freaking Blackberry and watch where you're going, unless you want to risk being kneecapped by some guy whizzing by in a wheelchair. The very thought of such an "always on" world makes me want to find a nice cave in which to take up residence.

Truth be told, I am a bit of a walking (well, sitting, actually) anachronism. I think I'd be much more comfortable in 1950 that I am in 2009. I'd enjoy living in a world where your boss might invite you into his office for a scotch and a smoke, men wore hats (I have a Fedora fetish), and the Dodgers played in Brooklyn. A time when Dizzy, Monk, and Bird were not adjectives and nouns, but musical savants who you could catch almost any night of the week by hoofing it down to 52nd St.. When pop music was Sinatra singing "Don't Worry 'bout Me", Bogart was the embodiment of male cool, and when home run hitters and touchdown scorers simply returned to the bench after doing their jobs, without any of the gyrating, chest pounding, and asinine displays of self-love that we see today. Of course, my version of 1950 includes no traces of Joseph McCarthy, or the racism and sexism that was endemic back then.

And yet, here I am blogging. One man can't impede the tides of time, unless he's willing to get washed out to sea in the process. In a way, being afflicted with Multiple Sclerosis has forced me into the technological embrace, as the Internet is a vital link to the outside world when you're dealing with limited mobility. Without the online MS community, dealing with this illness would be infinitely harder, both in terms of getting information on the disease, and getting to know others who are going through similar experiences. Some of my best friends are now people I've never actually met, many of whom I know only by their screennames. Remarkable, really.

So here I stand, or sit, blogging away, ass planted firmly in my wheelchair in 2009...