Bits and Pieces: Sex Sells Edition

Image by Nick Sherman via Flickr

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Well, I wonder if my Internet hit count will go up because the word sex appears in the title of this post. Such is the power of titillation, long known by advertisers. Funny, the word titillating is itself kind of titillating. Come to think of it, so are the words "Bits and Pieces". Anyway, on with some titillating tidbits (yet another word with titillating tendencies)…

Don't worry, I'm not about to descend into the tawdry. Not that I'm above tawdry, mind you. Back in my healthy, single days, I always believed that a little occasional debauchery did a soul some good, as long as all parties involved took part in the monkeyshines of their own free will, and no harm, emotional or physical, was done to any living thing. Eat, drink, and be merry, and all that. Life is full of uncertainties, sometimes you've gotta eat dessert first.

Unfortunately, the effects of MS and many other chronic diseases can dramatically impact the ability to partake of such shenanigans, and a few recent news items got me thinking about how sexuality is quite often a silent casualty to such illnesses, much to the detriment of those suffering from them. Sexuality is an important part of the human experience, and of all the losses meted out by disabling diseases, the effect on the sexual self may be one of the most keenly felt, yet least often talked about.

So, I submit to you the following news items, which I think shine some light on the issue …

· A new documentary film, "Scarlett Road", details the efforts of Rachel Wotton, an Australian sex worker who specializes in catering to the needs of a very specialized clientele, people with severe physical disability (click here). Among her clients is John, a severely disabled multiple sclerosis patient who relies on a chin controlled wheelchair. According to the film's website (click here), the benefits John has received have not only been emotional, but physical as well. In addition to increased self-esteem, he's regained some physical functionality that he thought was lost forever (and not just in his nether regions).

Human beings are incredibly social creatures, and the power of touch and a warm embrace are very real indeed. Loneliness is difficult enough to deal with for those lucky enough to be healthy, but for those poor souls locked in dramatically unresponsive bodies, the feeling of enforced solitude must be crushing. Though their bodies may be broken, their minds and spirits certainly are not, and for those so profoundly stricken the need for physical affection, for the exhilarating warmth of the intimate touch of another human being, for the feeling of somebody gently lying beside them, sharing a sensual embrace, must certainly be incredibly precious, its fulfillment tremendously and perhaps infinitely enriching.

Despite the supposed sophistication and enlightenment of modern societies, the severely disabled are still stigmatized and marginalized, and although lip service to their humanity is often paid, in reality far too many suffer the anguish of being a personality trapped in a useless prison of flesh and bone, their psychological and emotional needs barely even acknowledged. Some may question the morality of sex workers being paid to satisfy the needs of the severely disabled; I would question the morality of a society that forbids it, that denies the fulfillment of these most basic human wants and desires to those who need them most.

Thank you, Rachel Wotton, if for nothing else than simply caring. I wonder if there are similar services available to disabled females suffering from the same lack of physical attention?

"Scarlett Road " will be premiering at the Sydney Film Festival on June 11. Hopefully, it will soon be available for viewing outside of Australia.

Scarlet Road Video from Paradigm Pictures on Vimeo.

· A 66-year-old wheelchair dependent man with multiple sclerosis, Mr. Jim Keskeny, was kicked off a nudist cruise through the Caribbean after he injured himself while trying to use the toilet in his "accessible" cabin (click here). The man was traveling alone, and considered himself a "nudist at heart", although he hadn't previously participated in the nudist lifestyle, and decided at some point during the cruise that he didn't want to take his clothes off after all. Following his injury, the cruise line decided that he was in too debilitated a state to be traveling alone, although Mr. Keskeny was a seasoned traveler, and unceremoniously dropped him off in Mexico, leaving him to make his way back home to the states. The passenger claimed that he was perfectly able to take care of himself, and that the cruise line had simply used his accident as an excuse to get him off of the ship.

I'm embarrassed to admit that at first glance this story made me snicker. After all, the whole scenario seemed a bit absurd, a very disabled man signing up for a nudist cruise, sure to be populated with some extremely able-bodied naked people, a situation that seemed rife with all kinds of potentially (pun alert!) prickly situations and scenarios. One could easily question the man's motivations, and ridicule the almost predictable state of affairs he found himself in, but I quickly realized I was casting judgment on the man when perhaps all he was trying to do was be "normal", and satisfy some lifelong curiosities.

Putting aside all questions of infringements on the rights of the disabled and the legality of cruise line's actions, who among the afflicted doesn't yearn for some normalcy, to just once act on our wants and desires without having to account for the physical and emotional burdens wrought by bodily disability? Though taking a nudist cruise might not be everybody's cup of tea, it obviously was Mr. Keskeny's, and by God he went for it, torpedoes be damned. Certainly, his motivations for wanting to take the trip were no more or less prurient than those of his able-bodied fellow passengers, so why should the fact of his disability make any difference whatsoever? If he wanted to explore his sexuality in this manner, or simply just wanted to feel the freedom he perceived in the nudist lifestyle, more power to him. Rather than be subverted by his disability and assume the role of social outcast, Mr. Keskeny asserted his humanity and followed his heart's desire, certainly displaying some bravery in the process. Good for him.

· On another sexually related tangent, the drug sildenafil, better known as Viagra, has been shown in animal studies to reverse the course of multiple sclerosis symptoms (click here).

Upon seeing this headline, I reasoned that since Viagra works as a vasodilator, opening veins, this could play into the CCSVI scenario. Upon further investigation, though, it appears that the mechanism of action in regards to MS is the reduction of infiltration by inflammatory cells into the central nervous system. The mouse model of MS, called EAE, was used in the studies, and mice with EAE don't have blocked veins.

The fact of the matter is that EAE is a terrible model for human multiple sclerosis, and is induced by injecting the unfortunately targeted rodents with myelin proteins, provoking an allergic reaction within the animal that results in central nervous system damage. This bears little if any resemblance to the disease mechanism of the human illness, which is why so many loudly trumpeted "breakthroughs" in MS treatment on mice fail to translate into similar success stories when tried on humans. The simple fact of the matter is that mice don't get MS.

However, if Viagra does eventually prove to be beneficial in the treatment of multiple sclerosis, how ironic that a drug renowned for increasing stiffness in a certain body part might relieve a disease one of whose hallmarks is severe muscle stiffness. All I can say is that if the famous little blue pill is effective in treating multiple sclerosis, a lot of newly spry men are going to need to get their trousers altered, needing a little more room just below the waist…

Related articles

• Disabled man says he was kicked off cruise (msnbc.msn.com)

Still More Bits and Pieces

Image via Wikipedia

Here's yet another collection of MS related items and bits of news that I'd like to pass along to all who are interested. If you're not interested, please feign interest, as my feelings are very easily hurt.

For those expecting another of my essays filled with philosophical musings (mumbo-jumbo?) about life with chronic debilitating illness, no fears, more are on the way. I've got several ideas percolating in my brain pan, but they need just a little more seasoning. In other words, I've been too busy obsessing about my upcoming fantasy baseball league to write them down. I'm all in a tizzy because Chase Utley (the second baseman of the Philadelphia Phillies, as if you didn't know) is going to be starting the season on the disabled list. When will the horrors end?

Anyway, on with the show…

• Gilenya, the new oral MS drug recently approved by the FDA and the European drug regulatory agencies, is derived from a fungus called cordyceps that has been used in traditional Chinese medicine for over 5000 years. The spores of the fungus infiltrate the bodies of insects, turning them into zombies that look for sunny places to attach themselves, where they remain motionless while the fungus matures and finally bursts out of their bodies, eventually releasing more spores to continue the cycle in yet more insects.

  You can't make this stuff up, it sounds like the plot of a science-fiction movie…

  Watch this video, it's truly amazing…

• Last week the first annual meeting of the International Society for Neurovascular Disease was held in Bologna, Italy. On hand were many of the notable doctors and scientists researching CCSVI, and many intriguing presentations were given on a wide variety of subjects related to the "vascular theory of MS". Some of the most notable presentations included the results of a study using CT venography to try to detect venous abnormalities in healthy subjects (only 8% exhibited such abnormalities), a preliminary analysis of the effectiveness of CCSVI treatment on MS patients, the role of CNS hypoperfusion (decreased blood flow) in MS pathology, and the before and after results of venoplasty as seen on functional MRI imaging, among many others. (Click here) to see a list of all of the presentations given, along with links to abstracts of those presentations.

  There's enough here to keep CCSVI junkies busy with several hours of fascinating reading, and as there's nothing more important for a self-advocating MS patient than keeping abreast of the latest research news and information, reading through these abstracts is definitely time well spent.

• HSCT, a stem cell treatment in which a patient's immune system is completely destroyed through the use of chemotherapy drugs, and then "rebooted" by transplanting their own bone marrow derived stem cells back into the patient, has been shown to curtail disease progression, at least in some patients, over the course of a recently released 11 year study (click here). Patients with active inflammation fared best, with 44% of them showing no progression after an average of 11 years. Only 10% of patients without active inflammation (enhancing lesions) saw such success.

  On the downside, two patients (of the 35 study) died as a direct result of the immunoablative chemotherapy used in the regimen. However, in the decade plus since this study was started, the chemotherapy regimen used to ablate the immune system has been refined, and recent mortality figures are almost nil.

  In addition to a halt in progression, some of the patients did see their EDSS scores reduced for a time, but eventually regressed. After three, four, and five years the progression free rates of the treated patients were 80%, so it does appear that the effectiveness of the treatment diminishes with time.

  To my mind, these results raise a fair amount of questions, as they would seem to indicate that the underlying cause of MS is not dealt with even when the immune system is completely destroyed and then rebuilt from scratch. Whatever it is that causes MS, whether it be vascular abnormalities, smoldering viral or bacterial infections (such as EBV, chlamydia pneumonia, or HHV-6), environmental toxins, genetics, or, more likely, a combination of all of the above, is still at work, and eventually causes the immune system to go on the attack once again, at least in over half of the patients studied.

  Intriguing results, to say the least.

• Sativex, an anti-spasticity medication derived from the demon weed marijuana, has been approved in six more European countries, in addition to the UK and Spain, which had previously approved the drug (click here). Canada has also approved the use of Sativex (which is a spray used under the tongue) for spasticity, as it has been proven to be quite safe and effective in combating the painful and debilitating condition in MS patients.

  Spasticity results in stiffness of the muscles, and in extreme cases locks muscles frozen in position. The ailment is the result of muscles receiving nerve signals to contract, but not the signals to relax once again. It is a major cause of pain and disability in Multiple Sclerosis patients.

  Here in the United States, where the powers that be are wise and benevolent enough to protect hapless chronically ill patients from the decadent and debauching effects of any medicine that might be derived from the soul sucking marijuana plant, Sativex cannot even be tested, and instead we are left to take anti-spasticity drugs that in many cases leave patients in a state of extreme stupefaction.

  One such drug, Zanaflex, literally makes my eyes cross with exhaustion about 45 minutes after taking it, and if I'm not in bed about 5 minutes after the crossing of the eyes, I slip into a coma like slumber wherever I happen to be seated. I quite literally crashed forehead first into my computer keyboard when I once mistakenly tried to fight the effects of the medication and finish an e-mail I was working on. But at least my soul is intact, unlike all of those European and Canadian Multiple Sclerosis heathens soaking up the Sativex. Sure hope they have Sativex in hell, because that's where those tens of thousands of spasticity free Sativex hop heads are heading…

• Last, but certainly not least, I'd like to thank my brother, his main squeeze, my three-year-old nephew (their son), and my brother's main squeeze's brother and father, for participating in the Marathon de Ski SP (MS Ski Marathon) up in Montréal, Canada, to help raise funds to fight MS. With my unbearably cute nephew leading the charge, "Team Marc Stecker" won the day, completing about 65 runs down the mountain! My unbearably cute nephew even won a medal, which he was quite proud of. He probably would have been prouder if it was a Thomas the Tank Engine toy, but such are the tribulations of growing up. Incredible that my brother and the gang could accomplish such a feat, especially with all that Sativex stealing the souls of people left and right up there in Canada. Here are some pictures of the winning team…

CCSVI Video: Interview with Dr. Paolo Zamboni and Dr. Jack Burks

Sorry that things have been quiet here on Wheelchair Kamikaze for the last week or so, but I've been battling a bit of a bug. I hope you'll enjoy the following tasty tidbit of CCSVI information…

Here's another video sponsored by the CCSVI Alliance (click here), and edited by yours truly. It features an interview with the "father of CCSVI", Dr. Paolo Zamboni, and Dr. Jack Burks, an MS Neurologist who is the Medical Director of the Multiple Sclerosis Association of America. The interview was recorded on 01/17/11 in Miami Beach, Florida, at the International Symposium for Endovascular Therapy. Conducted by Sharon Richardson, the President of the CCSVI Alliance, the interview features Dr. Zamboni in person, and Dr. Burks joining via audio teleconference.

One of the biggest hurdles facing CCSVI researchers has been the reluctance of neurologists to get behind CCSVI trials, but this situation now seems to be shifting, and hopefully some much-needed interdisciplinary cooperation will be forthcoming. As is illustrated by the discussion in this video, CCSVI research is in its early infancy, and we've only scratched the surface on what needs to be learned. Momentum is building, though, and the next 6-12 months should bring much revealing data, as a host of trial information is scheduled to become available. Not soon enough for patients suffering from MS, I know, but we are getting there, slowly but surely.

And now, on to our featured presentation…

Some Unsolicited Advice for the National Multiple Sclerosis Society

The fall issue of the National Multiple Sclerosis Society's magazine Momentum includes an article entitled "Safe Travels through the Internet", in which I'm quoted quite extensively (click here for article). I'm very thankful to be included in the article, along with fellow bloggers Lisa Emrich (click here) and Trevis Gleason (click here), and was quite surprised when I was approached and asked to be interviewed. I think the writer did a terrific job on the piece, which is extremely informative and should be very helpful, especially for those just getting introduced to the online MS universe. The entire magazine is a quite good, and is definitely recommended reading.

After Momentum came out last week, I received several e-mails expressing surprise that I would participate in a magazine put out by the NMSS, the inference being that since I'm a proponent of CCSVI, and have written extensively about my largely unenthusiastic views of Big Pharma and their MS products, that I should shun any association with a group that many perceive as the enemy, and one which numerous patients view as simply a shill for mainstream MS interests and the big pharmaceutical companies.

It struck me that this is a huge problem for the NMSS, and for the MS population. The fact that a significant percentage of MS patients view the largest and most visible nonprofit MS advocacy group as an adversary is a disconnect that both those struggling with the disease and the organization that is supposed to be dedicated to fighting the malady can ill afford.

The NMSS (and their sister Canadian organization) have long been targets for many in the MS online community. That enmity has reached new heights in the last six months, however, after the organizations' admittedly slow, clumsy, and misguided initial handling of the CCSVI issue. Even after the Canadian and US MS societies dedicated $2.4 million to CCSVI research, dissatisfaction with the organizations grew, largely because the research that was funded is more academic than practical, as no treatment studies received vital financial grants. This brought online gripes against the societies to new levels, with accusations flying that the studies funded were at best simply delaying tactics, and at worst intentionally designed to disprove the CCSVI hypothesis for the benefit of the MS societies’ Big Pharma masters.

Of course, the NMSS does much more than fund MS research. The society runs a host of valuable programs that benefit the MS community on both the local and national level, among them support groups for both patients and caregivers, government advocacy, MS education, financial assistance, scholarships for those living with MS or their children, employment resources, and help with procuring assistive devices. As for the research the society does support, a quick perusal of the NMSS website reveals that the society funds many innovative and cutting-edge projects (click here), most of which would otherwise get no funding at all.

Still, a large portion of the MS population regards the society as a monolithic entity, an instrument only interested in maintaining the MS status quo, enriching the society itself, and pushing the use of the hugely profitable immunosuppressive and immunomodulating drugs currently offered by the big pharmaceutical companies.

Since I started this blog 18 months ago, I've gotten to know several employees of the National Multiple Sclerosis Society. It may surprise some readers that these folks are not firebreathing ogres with glowing eyes, forked tongues, and pointy tails, but compassionate human beings who fervently care about ridding the world of Multiple Sclerosis and helping patients stricken with the disease.

With all of the above in mind, I thought I'd offer a few suggestions to the NMSS in an effort to help build a bridge between the organization and those who find it highly suspect.

My first suggestion is a radical one, but one that I think would almost instantly restore credibility to the NMSS as an organization wholly devoted to finding a cure for Multiple Sclerosis. The society should simply stop taking any funding from the pharmaceutical companies that market MS drugs. I've been told that donations from pharmaceutical companies represent less than 5% of the financial support received by the NMSS, and if this is true, rejecting this funding shouldn't be a crippling blow to the society's bottom line.

Additionally, I believe that if this audacious step was taken, much of the revenues lost would be made up by an increase in donations by patients and their loved ones who currently hold the society in complete disregard. Online, patients regularly talk about asking everyone they know not to make donations on their behalf to the National Multiple Sclerosis Society. By making the bold move of rejecting pharmaceutical money, the society would quickly win back many of the patients who are, under current circumstances, now lost to it forever.

Thumbing through the most recent edition of Momentum, the quarterly NMSS magazine, I counted 13 pages of advertisements paid for by the pharmaceutical companies, in a magazine comprised of a total of 70 pages. In fact, Pharma ads were practically the only advertisements in the magazine (there were also a few from medical device manufacturers). Given these numbers, and the fact that for many individuals Momentum is their major point of contact with the NMSS, it isn't difficult to see how the magazine's readers might get the impression that the NMSS takes its marching orders from Big Pharma.

I'm sure that the higher-ups at the NMSS can't be blind to the fact that taking money from companies that make billions annually marketing obscenely expensive drugs that ameliorate MS symptoms but do nothing to address the still unknown cause of the disease appears to be a conflict of interest for an organization whose stated vision is "A World Free of MS". Such a world would send many of the companies that market MS drugs quickly into bankruptcy court. Multiple Sclerosis has become the goose that laid the golden egg for these corporations, entities whose mandate it is to constantly drive profit, and that by law are beholden to their stockholders, not to the patients who consume their products.

My second suggestion would be to let us see some of the real-life human beings that staff the organization's national and local offices. Those that I've had contact with are empathetic, caring human beings, and many of them have had their lives impacted significantly by friends and family who suffer from MS. The society desperately needs to shed its monolithic image, to show the MS community in a very real way that it is not made up of faceless automatons, but by concerned people who, as one told me, would gladly give up their jobs if a cure for MS could be found.

The NMSS needs to humanize itself, and a strong dose of the personal touch is needed. A starting point might be to feature the profiles of select society employees on the NMSS website and in Momentum Magazine. Much more good would be served by devoting a few pages of the magazine to profiling real life, sympathetic NMSS employees than to advertisements for Avonex, Rebif, or Copaxone.

Lastly, I would ask the NMSS to play nicely with the other much smaller MS nonprofit organizations that dot the MS landscape. I understand that the competition for funding is fierce, especially given our current economic climate. But the NMSS has developed a somewhat cutthroat reputation among the nonprofits that compete with it, all of whom share the goal of ridding the world of MS. The NMSS is the de facto face of Multiple Sclerosis to the public at large; it's the only MS organization most of the population has ever heard of. Certainly there is room for smaller, more specialized organizations to have a place at the funding trough. This isn't a zero-sum game. As a matter of fact, it's not a game at all. People's lives are at stake, and by working with smaller organizations, rather than against them, a cure for this beast called MS will surely come about sooner. As was said during the civil rights movement, keep your eyes on the prize.

I hope these suggestions are taken in the spirit in which they are given. The lack of faith in the NMSS by the very population it advocates for is reaching the crisis stage in some corners. Direct action is needed, and despite the misgivings and suspicions held by some MSers about the National Multiple Sclerosis Society, the society can be at the forefront of affecting real change, by heartily rejecting the status qou and showing the community an energetic new face. The NMSS must redefine itself to the MS community, to the mutual benefit of both…

Pieces and Bits

I'm getting tired of titling posts "Bits and Pieces", so I cleverly changed things up this time around. Don't be too rattled, though, what follows is still a collection of MS related items that I thought you might find useful and/or interesting...

Image by hitthatswitch via Flickr

• How effective are the CRAB (Copaxone, Rebif, Avonex, and Betaseron) drugs at slowing down the progression of disability in MS patients? Not very, according to some recently published studies. A paper analyzing these results has been making the rounds of the Internet forums for the past week (click here for paper), and the conclusion is that these widely prescribed and very expensive drugs do practically nothing to halt disability progression in the Multiple Sclerosis. The paper does a wonderful job at analyzing this very disappointing data, but I have to respectfully disagree with several of the conclusions it draws from this information. Written by Ashton Embry, who administers the excellent alternative MS site "Direct-MS" (click here) which contains very good information on the role of nutrition in the battle against MS, the paper draws the conclusion that the CRAB drugs are no better than snake oil in treating MS. While the new data suggests that these drugs don't stop the inexorable march of disability in MS patients, the drugs have been shown in clinical studies to cut down on the number of relapses and enhancing lesions (as seen in MRIs) experienced by the MS patients taking them. When these drugs were first approved, the assumption was that a reduction in relapse rate and lesion load would translate into a significant delay in disease progression. While it is a crushing disappointment that the CRABs most likely do not slow progression, to say they are worthless overstates things a bit. The fact is, they do reduce relapse rates for some taking them, which does improve the quality of life for patients with Relapsing Remitting Multiple Sclerosis. Although an improvement in quality of life might be less than what was hoped for, it is still of considerable benefit to those afflicted with the disease. Certainly, the drugs have been overhyped, and overpriced, but patients who had been experiencing four or five relapses a year before being put on one of the CRABs, and only one or two after, would argue that their taking the drug has not been without value.

  The fact that research is now showing the CRAB drugs to be of limited, if any, value in halting or even delaying disease progression points to the abject failure of putting MS into a box marked "autoimmune". Countless millions of dollars have been spent developing and marketing these drugs, and billions upon billions of dollars have been made selling them to the captive audience that is the Multiple Sclerosis patient population. The CRAB drugs have been a tremendous boon both to pharmaceutical companies and to the practices of MS specialists, but this latest data highlights the fact that they are only sophisticated mechanisms for symptom management, and that the years spent searching for compounds to better tinker with the human immune system have taken the eye of medical research off of its rightful target, which should have been the search for the root cause of the autoimmune reaction. The concept of autoimmunity has managed to turn MS into a multibillion dollar a year industry, and yes, the drugs that have been developed with that concept in mind have been of some relief to some MS patients. One can only imagine, though, that if the same time, money, and energy had been put into searching for that which causes our immune systems to go awry, we'd be much farther along in our quest for a cure to the scourge that we call MS.

  Let me state unequivocally that I am a CCSVI advocate who believes that the hypothesis should be researched as vigorously and as quickly as possible. The recent data regarding the ineffectiveness of the CRAB drugs in combating disease progression makes CCSVI research all the more imperative, and should fuel the clamor of MS patients worldwide to have their voices heard. We need treatment studies, and we need them now. If such studies should by chance disprove the CCSVI hypothesis, then so be it. At least the effort will have been expended in a noble effort to free MS patients from their disease, rather than consign them to a lifetime of indentured servitude to drugs of only marginal effectiveness.

• MS is a notoriously hard disease to diagnose, the diagnostic process being one of exclusion, meaning that other possible conditions must be ruled out before a firm diagnosis of MS can be established. My own diagnosis has been seriously called into question, and there is disagreement between the doctors who have examined me at the National Institutes of Health and my personal neurologist over just what it is that is slowly crippling me. I've been questioning my diagnosis almost from the day I received it; my symptoms and disease course just didn't seem to match what I'd read about Primary Progressive Multiple Sclerosis and the experiences of others suffering from the disease. Studies have shown that between 5% -15% of those diagnosed with Multiple Sclerosis have been misdiagnosed, and are actually suffering from some other illness. Here's a paper (click here) that details the conditions that can be mistaken for MS, and includes a list of 100 such diseases. It's easy to make yourself crazy with information such as this (and believe me, I speak from experience), so be careful not to let this create doubt where there should be none, but if you have serious questions regarding your diagnosis, this paper is an invaluable resource. Knowledge is power, but be sure to wield it wisely.

• Multiple Sclerosis Dreams (click here for website) is a new organization designed to bring hope and excitement to patients living with MS. Similar to the Make a Wish Foundation, MS Dreams is a nonprofit organization that will be granting the dreams and wishes of desperate and needy MS sufferers of any age. Such dreams might include sending them on the vacation a lifetime, meeting someone they've found inspirational, or supplying them with much-needed treatments or devices. The organization will be in the running for a "Pepsi Refresh" grant of $25,000, which you can help them achieve by voting for MS dreams once the internet polls open on August 1. Although a new organization, its organizers seem extremely sincere and devoted, and I wish them the best of luck in launching their endeavor. So, please visit their website, and vote early and vote often...

• Researchers at UCLA have found a possible physiological cause for the depression often suffered by MS patients (click here for info). As if dealing with MS and its associated crap isn't depressing enough, it now appears that the disease causes atrophy of the hippocampus, a region of the brain closely associated with depression. MRIs have revealed that MS causes gray matter atrophy in general, so I suppose findings like this shouldn't be all that unexpected. A more momentous finding would be identifying what causes such atrophy, and may I suggest that decreased blood flow through the brain, such as might be seen in a vascular condition like, say, CCSVI, might be a pretty good candidate.

  Of course, zombies also have an appetite for gray matter, but I don't think I've ever seen a paper linking zombies with depression or MS. As a matter of fact, a good zombie movie often cheers me up, so I'm willing to go on record right here and right now stating that zombies do not cause MS. Then again, no zombie flick I've ever seen really identifies exactly what causes zombie-ism, so I guess it can’t be ruled out that MS causes zombies. So be careful during your next visit to the neurologist's office, you never know when one of your fellow patients may try to take a bite out of you.

Well, not the most uplifting collection of information I've ever presented, so let me leave you all with cheerfully healing thoughts of puppy dogs, rainbows, pretty ponies, and...

zombies zombies zombies. It's fun to say "zombie". (Don't forget, I dictate these posts using voice recognition software...)

Bits and Pieces

Here are a couple of things that have caught my attention over the past week or so, and some new photos I added to the Wheelchair Kamikaze gallery. Sorry, no attempts at profundity this week, just a few things I hope you'll find interesting/helpful/entertaining...

• About a week and a half ago, I started taking Ampyra, the recently approved drug that's supposed to help MS patients with mobility, but so far I have nothing major to report. I guess this is one of those good news/bad news situations, since one of the drug's major side effects is seizures. So, I really haven't seen any noticeable improvement in my strength or mobility, but I haven't had any seizures, either. Woo hoo... The Today Show did a feature piece on Ampyra, and focused on an MS patient whose ability to walk improved dramatically after taking the drug. Her doctor characterized the patient as a "dramatic responder", but, though I'm trying to do my best Humphrey Bogart, it's looking like there will be no drama for me... Incidentally, though the retail price of Ampyra is an eye bulging $1800 per month, my insurance company approved my taking the drug with a co-pay of only $40 per month. So, I'll refrain from bashing the insurance companies this week, though I still firmly believe that those who occupy the executive offices of such firms all have cats eyes and cloven hooves... (click here for the clip from The Today Show)

• When I was first diagnosed with MS, back in the spring of 2003, I read a bunch of books on Multiple Sclerosis. Some of them were decent, others just loads of crap. Since then, I haven't really been interested in reading MS literature, but I recently learned that Julie Stachowiak, who writes the always erudite, entertaining, and well-informed MS channel on About.com (click here for channel), published a book entitled "The Multiple Sclerosis Manifesto: Actions To Take, Principles To Live By". I decided to pick up a copy, and I'm happy that I did. Dr. Stachowiak (she has a PhD in epidemiology), who is herself an MS patient, has written a book that not only details the latest and greatest in the science and treatment of MS, and how best to manage the sudden status of being a "patient", but is also full of practical suggestions and philosophies on how to live a meaningful and fulfilling life despite the fact that MS has forced its way into it. In fact, the book could surely benefit even those not suffering from chronic illness, as the wise advice it offers, written in a highly personable and very readable manner, should be of value to any human being attempting to make their way down the twisting and bumpy road of life. The Multiple Sclerosis Manifesto definitely gets the Wheelchair Kamikaze stamp of approval (click here to view book on Amazon)...

• The ever inventive folks at Honda have come up with this neato device, which they've lyrically named the "U3-X Personal Mobility Concept". It looks like quite the incredible gizmo, and with a few modifications could definitely help those with mobility issues. I don't know that in its current form it would be of much use for the severely disabled, but its ability to balance and move laterally as well as forwards and backwards is really amazing. The video itself is goofy beyond belief, but it will be interesting to see if Honda actually develops this into a workable consumer product. Perhaps at some point in the future I'll have to rename this blog “U3-X Personal Mobility Concept Kamikaze". Big shout out to Wheelchair Kamikaze reader and fellow sports car enthusiast Charlie (Tuna) for bringing this to my attention...

• I've added some new photos to the Wheelchair Kamikaze photo gallery, which is comprised entirely of photos I've taken with a camera mounted on my wheelchair. The below photos were all taken in Central Park. Click on the thumbnails to view a larger image.

Man Plans...

Image by Ivan Walsh via Flickr

My last post characterized MS as an incorrigible thief, gradually stealing all that is near and dear to the patients it torments and those who love them. Combined with a video produced by the NMSS's Beth Clark that heart wrenchingly recounted her family's struggles with her mom's very aggressive MS, the post took a hard look at some of the ugly realities about Multiple Sclerosis, and, judging by the many online comments and private e-mails the post elicited, it hit readers hard, and was quite upsetting to many.

It's never my intent to upset or depress the readers of this space, and I try to infuse my writings with reasons for hope, and with strategies for fighting back against our common foe, if not in body than in spirit. When viewing Beth's video, it's important to keep in mind that her mom was hit with an especially destructive and debilitating form of MS, and was stricken at a time when there were no medical treatments for the disease.

Still, MS is at best a daunting adversary. For those of us with the progressive forms of the disease, there are no proven pharmaceutical interventions. There are medicines to help us manage some of our symptoms, but we are largely left to watch helplessly as the disease takes its physical toll, which proceeds at different rates and in different forms for each of us, but marches ever onward for us all. How then, to separate the physical from the psychological, and not allow MS to break our spirit even as it spins its contemptible web of disability?

Although it's been said so often so that the sentiment might feel dangerously trite, it is imperative to do your best to live in the now. Even with a present filled with uncomfortable and regrettable realities, the only way to find contentment in any form is to stay rooted in the moment. It can be enormously enticing to dwell in the past, which from the vantage point of a compromised present can seem like a dreamlike fantasy land. Even hard times from years long gone can suddenly be yearned for when remembered from the seat of the wheelchair. Oh, to suffer some heartbreak but still be able to walk, to live through one of life's bitter disappointments but still be able to get up the next day with the chance to make right the wrongs.

Make no mistake, it can be of significant joy and comfort to remember the glory days, and connecting with friends and family who shared those times is an important way of confirming that, yes, all of that crazy stuff really did happen, but the past is best used to inform the present, to learn from it the lessons that allow us to make the most of our most precious possession, today. We only get one shot at today, and those of us who deal with the reality of chronic illness know all too well that wasted time can never be recovered, that when today converts to yesterday it is no longer a living thing, but becomes just a lifeless snapshot for the scrapbook in your mind. Better make this day a good one, despite whatever hardships must be overcome, because there is no greater tragedy than looking back and realizing that you've let yet more of that most precious and ever dwindling commodity, time, slip away.

The fact that MS is a progressive disease can make the future appear to be quite an ugly proposition. No matter what stage of the disease you're in, the knowledge that this day could very well find you in better shape than tomorrow can turn all tomorrows into fearsome things. But the incontrovertible truth is that no man knows what tomorrow will bring.

There is an ancient Yiddish proverb that says, "Man Plans, God Laughs". Regardless of your religious inclinations, the truth contained in those words is undeniable. If "God" doesn't work for you, then substitute "The Universe" or "The Fates". It is the rare person who can think back 10 years and honestly say that their lives have unfolded just as they would have predicted. For most of us, healthy or sick, the jigs and jags of life bring breathtaking surprises, good, bad, and everything in between. Remember, too, that good and bad are simply labels that we choose to apply to the circumstances in our lives. Nothing that happens to us is inherently good or bad, they only become so when we choose to tag them as such.

We all have little preview clips of what we expect the future to hold running persistently in our minds. Like the previews we see in movie theaters, though, these clips rarely bear much in common with the realities of the full-blown production. For a person with MS, the preview running in our heads can easily be that of a horror flick, but like most fright films, the anticipation is often much more terrifying than the reality turns out to be.

When first given my diagnosis, my inner projectionist spooled up reels of worst-case scenarios, some of which actually did resemble the condition in which I now find myself. The image of me in a wheelchair was sickening, and along with that image I conjured up all sorts of torment and agony. The reality of me in a wheelchair, though, while nothing I would have chosen, is a far cry from the misery I then imagined.

Much to my surprise, I'm still me. I can still laugh, and love, and worry, and despise, just like the old me. And without the wheelchair, there would be no Wheelchair Kamikaze, which has turned out to be one of the most humbling and gratifying roles I've ever been privileged to play. The give-and-take I've had with the readers of this blog have been incredibly enriching, and I'm grateful to everyone who reads these words.

Would I chuck it all for the chance to take a graceful and painless stroll around the block? Hell yes, but I refuse to let the lack of that option plunge me into the depths of despair. I choose to experience this moment in its fullness, informed by the lessons of the past and undaunted by fears of the future. It's not always easy, this living moment to moment, and I screw up more than I care to admit, but with practice and diligence it can be done more often than not.

As a community, people with MS have more reason for hope now than ever before. CCSVI holds the tremendous and very real promise of fundamentally changing the way Multiple Sclerosis is thought of and treated. Even if CCSVI turns out to be a false lead (which I don't think it will be), the forces that the CCSVI movement have unleashed will never again be put back in their bottle. Patients have learned to advocate for themselves, and researchers are being pried away from their beloved "autoimmune" model and forced to question all their previous assumptions. Additionally, stem cell research moves steadily forward, shining rays of hope on those whose nervous systems are in desperate need of repair.

We could very well be standing (or sitting, whatever the case may be) at the cusp of a radical new era in the care and treatment of those afflicted with Multiple Sclerosis. All the more reason to not flee into your own past, or crumble at thoughts of your possible future, but to live each day as if it's the last today you'll ever have. Because it is; for both sick and healthy alike, once gone, today is never coming back.

NMSS Video on Ampyra, New MS "Walking" Drug

Image by Hljod.Huskona via Flickr

The National Multiple Sclerosis Society has released a video featuring the noted neurologist Dr. Patricia Coyle, answering questions on Ampyra, a recently approved drug that's meant to increase the mobility of MS patients by increasing the conductivity of damaged nerve cells .

I wrote about this drug a few weeks ago (click here), noting that it's a time released version of 4-AP, a compound that has been used to treat MS symptoms for decades.

The following video covers all of the pertinent information about Ampyra, but doesn't go into the one controversial aspect of the new medication, its cost. The wholesale price of Ampyra is over $1000 per month, while the same amount of the generic drug that it is derived from, 4-AP, costs about $30.

One reader of my previous post did leave a comment that they participated in the Ampyra trial, and found the drug to be much more effective than 4-AP. That's welcome news that would make Ampyra a valuable tool for those struggling with MS. I certainly hope this info is correct, considering the price of this drug. If anyone out there has any information on how Ampyra differs chemically from 4-AP, I'd appreciate your passing it on...

Disability Mind Games

Image by juanignaciosl via Flickr

This last week has been kind of rough. The combination of the wear and tear from my trip down to Bethesda to visit the NIH and my first cataract surgery (the second is scheduled for this morning) have pretty much knocked me on my ass. My neurologic symptoms have ramped up, the avascular necrosis in my joints has become excruciating, and I'm just plain worn out.

While it's easy to catalog all of my physical discomforts, what's harder to convey are the constant mental gymnastics that those of us who deal with chronic disabling illnesses have to perform.

Receiving a diagnosis of multiple sclerosis (or any degenerative disease) carries with it an intense emotional burden. You're left to not only cope with the your present state of disability and the knowledge that you have an incurable, progressive disease, but also with the unpleasant realities of what very well could be an increasingly disabled future.

Immediately, a newly diagnosed patient is confronted with some mindbending choices. All of the approved MS therapies carry with them some serious side effects, and in the case of some of the most effective therapies, potentially deadly ones (fatal brain infections). Thus, the newly minted MS patient is hit with a double whammy. First told they have an incurable, potentially crippling disease, then asked to go ahead and pick their poison. What a choice to be given to a person whose world has recently been rocked to its core, huh? Choose a drug that has been shown to sometimes dramatically improve the quality of life of MS patients, but carries with it the threat of a horrible brain infection, or forgo it for less effective therapies, each of which also has its share of unpleasant side effects? The pharmaceutical companies paint a decidedly rosier picture of things, but it is what it is. Not exactly like picking chocolate or vanilla.

As the disease settles in, there are dozens of less momentous mental calculations that increasing disability forces upon you to just make it through the day. As disease progression slowly whittles away at strength and dexterity, what had been simple acts become exercises in difficulty and frustration. Lounging around in bed watching TV, and your feet get cold? Well, silly, just go put on some socks! Yeah, right. My right arm and leg are useless, and avascular necrosis has put a painful limit on my range of motion. Putting on socks, when possible at all, hurts like a bitch, and watching myself struggle to complete such a formally mindless act is gut wrenching. Many times, that mental hoop just seems too uninviting to jump through, and I decide to simply live with the cold feet.

The same mental calculus repeats itself over and over throughout the day. Surfing the Internet on my desktop computer, I might get thirsty, but the kitchen is now a long and painful stumble away, and getting into the wheelchair to travel the 30 or so feet to the fridge is a disheartening pain in the ass, so instead I go dry. Besides, if I did embark on the journey to the kitchen to fix myself a beverage, thanks to neurologic bladder dysfunction, I'd have to pee (quite urgently) in 10 minutes anyway, meaning yet another struggle to get up and drag myself to the bathroom.

When I was a kid, my mom used to make me laugh when she'd see me fidgeting and doing the little boy "pee pee dance" by jokingly singing, "Hasten, Jason, get the basin... Plop, plop, get the mop". Yes, mom is quite the cutup. Now I find myself silently reciting that little ditty as I struggle to get to the loo, only these days it's not so funny. Quite often, like the delight of warm feet, the pleasures of a glass of OJ just don't seem worth it.

These kinds of considerations grow exponentially when I'm thrust into social situations either at home or (gasp!) in the outside world. I'm a social person, and love time spent with family and close friends, but the physical and mental toll of such socializing is exhausting. Entertaining people at home is infinitely easier than venturing into the outside world, but still, sometimes I'm just not up to putting my disabilities on display. I can put up a brave front and slap on my happy face, but four or five hours of suppressing a grimace when my hips bark, or pretending not to struggle when trying to eat with only one hand, or attempting to unobtrusively stumble or wheelchair my way to the bathroom before disaster strikes, exacts a physical and emotional toll. A night spent with friends most often leaves me spending the next day simply recuperating. One can't be a hermit, though, and the benefits of spending time with those dear to you usually do outweigh the negatives. Nevertheless, I'm forced to put all of these variables into the equation, and ration my time accordingly. It's as if life can only be lived in small, easily digestible portions.

This leads us then to the ultimate mental calculus, that of the end game. It's never pleasant to think about, much less talk about, but as disability progresses the reality of your own mortality becomes crystal clear. Inevitably, you begin to ponder the imponderable: just when is enough, enough?

There are those who will suffer every indignity simply to remain breathing. I am not one of them. This is perhaps fodder for another post, so I'll keep it short in this one. Suffice it to say that no one here gets out alive, and for me it's all about quality, not quantity. I've no intention to spend much time as a fully conscious mind trapped in a prison of completely useless flesh and bone. This is the ultimate calculation, then, to decide just where to draw that line in the sand.

I've spoken to other patients in much the same boat, and we've all shared similar thoughts. Some have taken the actual steps necessary to facilitate their exit, laying in the necessary supplies. I've not yet reached that juncture, but I do have a clear picture of my point of no return. I fervently hope that I never get there, but simply going through this mental exercise has changed me in fundamental ways. This, perhaps, is the deepest and most intractable psychic wound progressive illness inflicts. I do believe that it's an insult that can never heal...

(Please bear with me while I recover from my second cataract surgery. I'm not sure how long my vision will keep me from the computer. I'm not expecting too long an absence, though. You'll not be rid of me that easily...)

Footprints and Shadows: The Tao of MS

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.

Us and Them

Multiple Sclerosis strikes each of its victims differently. Some patients suffer from cognitive difficulties, others from muscle weakness and spasticity, and yet others from severe fatigue. Most patients put up with their own peculiar blend of Multiple Sclerosis symptoms . One thing we all have in common, though, is that we are no longer "well". We have been set apart by disease, we are separated from the main, and instead have become members of an exclusive club that none of us wanted to join.

Most of us are diagnosed while our symptoms are still fairly mild, and for a while, we can pass as "well", our new club membership hidden from general view. But as the disease progresses it becomes unmistakably clear that something is wrong. We are no longer just like everybody else, dealing with the usual day-to-day crap that life hands out indiscriminately. Breakups, money troubles, deaths in the family; hell, we're all in that together. But when struck with illness, and particularly with an illness like MS that advertises its presence like a highway billboard, we become something different. We become the "other", and many people begin to treat us as such.

Like our symptoms, the change that we see in how others interact with us is subtle at first, almost imperceptible, but becomes more obvious as the illness continues to unmask itself. The disease not only wreaks havoc on us internally, physically and emotionally, but externally as well, as it changes our relationship with the world and the people who populate it.

As patients progress from invisibly ill to visibly disabled, many express dismay at how diminished they feel by the crass and thoughtless actions of others. There's one important thing to keep in mind when confronted with such situations, three little words that very succinctly sum up the whole of mankind: People are idiots. That goes for everybody, me included. I can easily look back over my life and recall countless instances of my own sheer idiocy.

I fully remember, back when I was well, becoming incensed at the wheelchair bound person who had the nerve to want to board the bus I was riding to work on. Their utter disregard for my schedule required the driver to get up out of his seat, walk to the back of the bus, operate the wheelchair lift, secure the disabled person in place, walk back to the front of the bus, and finally get us moving again. Dammit, that gimp made me late for work! I was fuming. Yes indeed, I was, am, and always will be an idiot. And so will everybody else in the world.

This is not to excuse people for their insensitivity, but rather is an attempt to understand them. Truly, most of them know not what they do. Generally, people are so wrapped up in their own lives that they give very little thought to those around them, disabled or not. If they do take a moment to ponder us, we serve primarily as a frightening reminder of their own frailty. When they treat us like we are somehow made less by our disabilities, or as if being in a wheelchair somehow implies that we are mentally feeble, or if they simply act with utter indifference to our difficulties, most often their attitudes and actions have no real malice behind them. They are just doing what human beings do, each of them experiencing their own version of reality, featuring themselves as the center of the universe.

I find the best defense against this plague of solipsism is a good offense. Speak up, develop a style, let your humanity shout from the rooftops. When out and about doing the Wheelchair Kamikaze thing, I'm usually wearing a fedora, and have my cobra head cane attached quite visibly to my chair. I drive the thing with a boyish abandon, refusing to allow the wheelchair to turn me into a shrinking violet. Quite the opposite, actually, I'm much more rambunctious now than when I got around on two feet. Very often, I also have a big honking camera rigged to the chair, which usually grabs people's attention. Flourishes like this seem to remind people that there is a human being in that mechanical contraption, and one that might even be interesting to talk to, if you can catch up to him.

Dealing with friends and family can be a much more complicated matter. Those with whom we share affection can be almost as traumatized by our illnesses as we are. This trauma can show itself in many different ways, most of them unpleasant, and some quite troubling. They run the gamut from doting and over attentiveness to the severing of ties and the ending of long-standing relationships.

I've seen several of those closest to me show themselves to be almost entirely unable to deal with my encroaching disability. One of my oldest and dearest friends, with whom I've shared some of my most guarded thoughts and feelings, as well as an almost comical mutual hypochondria, and who helped me through years of emotional ups and downs, was simply incapable of maintaining our relationship once I got sick. My illness simply scared the living crap out of her. If it could happen to me, it could happen to her, too, and I think that this reality was just too much to handle. It's now been several years since we last spoke, and honestly, I don't hold it against her. I know this person well enough to understand that this seeming disregard actually speaks to just how deeply she cared about me. She simply couldn't bear to watch me wither. Although, if she reads this, as I suspect she might, I'll say this: pick up the damn phone the next time I call, or I just might get angry. Stop being silly. I'm the same me that I always was, and I promise, over the phone you won't be able to see my MS...

I've seen similar responses in several very close family members, as well. On the phone, things are great, the same as they ever were, but in person there is a visible unease, an awkwardness over compensated for by false joviality and babbling happy talk. Again, I try my best to understand that this is an expression of the heartbreak they feel over my getting sick.

When I first started experiencing real difficulty walking, and was unsteady even with a cane, I watched one family member’s blood drain from his face as he watched me struggle, and I thought for a moment that he actually might pass out. Now, it's high time he get over it, and learn to deal with the new, unimproved me, but folks in general don't deal well with change. When that change involves somebody they love very deeply suffering from a horrendous and progressively crippling illness, their brains kick into denial mode, and some are simply not strong enough to force acceptance.

I am blessed to have several folks in my life who treat me just like the same old jackass I ever was. When I'm with them in the wheelchair, the only difference between then and now is that I suddenly seem to have gotten a few feet shorter. I'm still the target of their barbs and wisecracks, and they're still the target of mine. Once they understood it was okay, they've joined me in joking about my predicament. After all, the whole thing is simply too absurd to not joke about. Me, in a wheelchair? Zooming around like a crazy person, wearing a vintage fedora, accompanied by a wooden snake complete with fangs and forked tongue? Rolling around, taking pictures from my new and somewhat unique vantage point, and videotaping my near collisions with objects both animate and inanimate, great and small? You've got to admit, it's kind of funny. It gets less funny the more disabled I become, but still, when I stop being able to laugh at myself, that's when it's time to check out...

I've found that the people I have the most trouble coming to terms with are old friends that know nothing of my illness, who have tried to reconnect. In this age of Google and Facebook it's very easy for people who long ago drifted out of your life to find you and try to reestablish connections. For some reason, I find that I have some sort of an aversion to this kind of thing. Although many who have tried to reconnect are people that I've thought of often and who I'd really like to know again, I find myself unable to breach the MS hurdle.

I know this is strange, since I certainly make no secret of my MS (as is evidenced by this blog), but I've yet to respond to anyone from my past who isn't aware of my illness when they've tried to "friend" me on Facebook. It's gotten to the point where I'm practically Facebook phobic, and usually avoid the site.

Many of these folks are people who knew me in my 20s and early 30s, when I was young, reckless, and living a very bohemian lifestyle. In some ways, I think I'd rather them just remember me as I was, forever young. Thing is, now that I'm older and wiser, and having dealt with this freaking illness, I might actually be able to be of some benefit to them, if only to serve as an example of why they should live their life to the fullest each and every day. Still, I can't quite get myself to respond. Even as I write this, it sounds foolish, because I actually miss many of these people, and would likely very much enjoy having them back in my life.

As I said before, I have only one explanation. Just like everybody else, I am unquestionably an idiot. A complicated, disabled idiot, but an idiot nonetheless...

Pleased to Meet Me

Image by melolou via Flickr

MS has wrought an almost incalculable number of extreme changes on my life. Physically, the changes are obvious. Right arm and right leg on the fritz, and I quite often have a wheelchair sprouting from my backside. Changes like that are hard to miss. More difficult to discern are the internal transformations, the changes in mind and spirit.

I'm quite lucky in that MS has not dramatically damaged my cognitive abilities. Many MS patients suffer terribly from the deterioration of their memory and their ability to think. So far, at least, my faculties seem to be relatively intact. My short-term memory isn't what it used to be, but that may be more a function of age than disease. If anything, dealing with multiple sclerosis may have actually heightened my senses of thoughtful perception, and has certainly enlarged my capacity to feel empathy for all of those who struggle to simply make it through the day, sick or not.

I've lately come to realize that MS has not only altered my perception of the world around me, but also of the world within me. It's changed the way I think about myself, in some unexpected ways.

When healthy, I suffered from the common delusion of believing in the limitless possibilities of the future. Although my rational mind understood that my youthful dreams of fame and fortune were not likely to be fulfilled, there was still a part of me that half expected some huge stroke of good luck to dramatically alter the course of my life, to suddenly elevate me into the stratosphere of society. Surely, there was still the chance that I might find myself sitting next to Jay Leno, chatting about my recent Oscar triumph. Nevermind that I hadn't acted in anything since my sixth grade production of "The Sound of Music", and I was much more likely to be directing traffic than a film anytime soon. In America, anything is possible.

Well, MS pretty much doused those flames. These days, my fantasies have less to do with winning Oscars than with taking a stroll around the block, though the chances of either are probably equally astronomical. Still, I find myself dealing with the world in a much more rational way. Rather than feeling resentful that my grand imaginary life was being thwarted by the realities of my everyday existence, I now find myself grateful for the simpler pleasures; lunch with a close friend, a nice day for taking photos, or even just a few hours when the pain in my hips mysteriously subsides. Here's a universal truth, brought to me courtesy of Multiple Sclerosis: The biggest blessing on earth is a quiet night at home spent with people that you love.

MS has stripped away the many trappings of life that had become central to my self identity. High profile job in a "glamour" industry? Gone with the wind... Sexy little sports car? Couldn't even get into one these days... Fashionable clothes and fancy shoes? Ha! Putting on my socks is now a painful exercise in acrobatics, and I could just as easily use buttons and shoelaces as I could split the atom... All of those externals that once so dominated my definition of self are now mere memories, and in their place I've gradually come to know a different me, a me that resembles one that I knew a long time ago, back when I was a child unencumbered by the accouterments of adulthood.

Despite the complexities of being disabled, life in some ways is now a much more simple affair than it was when I was healthy. Absent of the concerns of career and social climbing, I find myself free to pursue my whims and desires in a kind of newfound innocence. No longer confined by the boundaries of the workaday world, I can be as eccentric as I want to be.

I've always felt like something of a living anachronism, a man born in the wrong time. Well, if I want to spend my days in 1935, now there's nothing to stop me. So here I sit, listening to The Mills Brothers or The Ink Spots, and I never leave the house without wearing a fedora, preferably at a rakish angle. After all, what sets off a wheelchair in the summer better than a nice Panama hat? I can watch baseball to my hearts content, unencumbered by worries about that big project that is due, or tomorrow's budget meetings. I can spend my days making videos, taking photos, and writing, a situation that I literally used to dream of. Naturally, those dreams never included a wheelchair mounted camera, or writing about my experiences dealing with a dread disease, but, as my father used to tell me, if you want to dance you've got to pay the band.

Of course, there are eternal worries about my illness, but somehow, these are different than the ever-changing concerns I had during my healthy life. These new anxieties are immutable, unbending, and worn like a second skin. Unlike most of the problems I encountered before MS, there is really nothing tangible I can do about my illness, so the all-pervading anxiety it produces, while wearisome, doesn't usually overwhelm the mind. I do my due diligence, fastidiously keeping up with all the latest research, and aggressively pursuing my medical options, but beyond that, there is very little control I can possibly have over what MS is doing to my body on a day to day basis. As hard as it was to come to terms with that reality, the only thing left is to let it be.

I've found this new me to be much more honest with myself, much less likely to put up with dishonesty in others (especially if they're being dishonest with themselves), and completely disinclined to be convinced to do things out of social obligation. I've learned that saying no is not an act of selfishness when it's an act of self-preservation. Often times I simply don't feel well enough to live up to the expectations that some might have of me. I'm sorry to disappoint them, but if catering to others means that I'll spend the next three days in bed, it's just not going to happen. With the love and support of my very caring (and very indulgent) wife, I'm free to pursue interests and inclinations that had long lain dormant simply because life as a working adult had left no time for them.

Make no mistake about it, having MS sucks in every way it possibly can suck, and I will never be one of those patients who claims that "I have MS, but MS doesn't have me". MS most certainly does have me, by the balls (sorry, ladies). But, in a sense, MS has given me the freedom that most human beings lose upon entering grade school. The price for that freedom has been dear, and I would never have willingly paid it, but freedom, whatever the cost, bears with it an inherent sweetness. I've learned that it's okay to savor some of that sweetness, despite the horror and dismay of having progressive MS. The disease has allowed me the opportunity to rediscover myself, and, I must say, it's been an unexpected pleasure to meet me...

Great Webcast: Understanding Primary Progressive MS

Primary Progressive MS (PPMS) is an often poorly understood disease, even by those suffering from it. PPMS afflicts only about 10 to 15% of the MS population, and differs significantly from other forms of the disease. In visiting many of the Internet MS forums, I've found that it's quite common to see much confusion and misinformation about this form of the disease being passed from patient to patient, including such fallacies as "most people with PPMS are dead within five years of diagnosis", "PPMS inevitably leaves its victims bedbound vegetables", and "PPMS leads to the compulsion to drive wheelchairs crazy fast down crowded city streets". Okay, I made that last one up, but there really is a lot of confusion about PPMS.

The National Multiple Sclerosis Society has just released a series of three videos covering various aspects of PPMS, and I found them to be surprisingly honest and informative. Most importantly, the videos dispense with many of the old notions about the disease, and touch on some of the latest developments in the research and understanding of this very challenging form of MS. In my opinion, these videos are so useful that they should be viewed by anybody dealing with any form of MS, simply because they contain valuable information that crosses the boundaries of disease type.

The first video, "Understanding Primary Progressive MS", talks about the substantial differences between PPMS and the other forms of the disease (RRMS, and SPMS, and PRMS), and discusses some of the challenges involved with correctly diagnosing PPMS. This video features Dr. John Richert who is the Ex. VP, of Research & Clinical Programs at the NMSS, being interviewed by a woman who looks very much like somebody I dated about 14 years ago. I wonder whatever happened to Jill?

The second video, "Strategies, Research, and Hope for Primary Progressive MS", is to me the most valuable of the three videos. In it, Dr. Richert clearly makes the point that an "autoimmune" response is not the primary driver of the PPMS disease process, and thus none of the current crop of immunosuppressive or immuno modulating drugs are useful in treating it. He also states that this is also true for SPMS, and that there is more going on in the RRMS disease process than was previously thought, as well.

Hallelujah! I've been saying for years now that a misguided immune system is only a symptom of MS, and not the cause of the disease, and that focusing on suppressing or modulating the immune system is like treating a broken leg with painkillers. This disease damages far more than just the myelin coating of nerve cells, and it's great to know that research time and money is finally being spent on trying to comprehend the underlying cause of the disease, as well as searching for strategies to protect and repair damaged nerve tissue. This is a tremendous leap forward in the understanding of the Multiple Sclerosis disease process, and pertains not only to PPMS, but to all of the other forms of the disease as well. In my opinion, this video is must viewing for everyone afflicted with any form of MS.

The third video, "Moving Forward with PPMS", talks about the emotional and psychological impact of dealing with a progressive degenerative illness. It features Rosalind Kalb, PhD who is the Director of the Professional Resource Center at the NMSS, being interviewed by a very somber man who looks like somebody just defecated in his lap. Cheer up, dude, things can't be that bad...