Sunday, March 25, 2018

First Annual Progressive MS Day – Wednesday, March 28, 2018

Okay, all of my fellow progressive MSers, we finally have a day to call our own! This Wednesday, March 28, 2018, will be the first ever Progressive MS Day, a time to draw the world’s attention to this most debilitating form of the scourge that is multiple sclerosis.

As most of you already know, the majority of MSers (approximately 85%) are stricken with the relapsing-remitting form of the disease (RRMS) which is, of course, no picnic itself. Despite the advent of immunosuppressive drugs that effectively reduce relapse rates and the formation of new lesions in relapsing patients – medicines that carry with them laundry lists of serious and potentially fatal side effects – many of these patients may eventually transition to a progressive form of the disease, known as secondary progressive MS (SPMS). This stage of the disease sees patients no longer experiencing relapses and remissions, but instead a slow and steady decline in physical and mental functioning. Though there are currently over a dozen drugs approved to treat RRMS, there is only one approved to treat SPMS.

A minority of MSers (about 10%-15%) start off with progressive disease. This form of the disease is known as primary progressive MS (PPMS) and is considered the most challenging type of MS to treat. Currently, there is only one approved drug for the treatment of PPMS, and its effect on this debilitating monster is relatively modest, slowing down the progression of disability by about 25% in some patients.

Given this backdrop, it’s high time that the public is made aware of the ugly side of MS, the side which doesn’t have patients Dancing with the Stars or climbing Mount Everest. Progressive MS Day will offer our community a chance to draw attention to this particularly daunting form of MS, and by doing so hopefully draw resources towards treating and ultimately conquering it. Several states are expected to officially recognize Progressive MS Day, along with most MS patient advocacy groups. It is expected that this first Annual Progressive MS Day will grow in scope in years to come, but this year the event will be staged primarily in the virtual world of the Internet. Baby steps, folks, for those of us who can take any steps at all.

Progressive MS Day has been kick-started by the drug company Genentech, which manufactures and markets Ocrevus, the only drug currently approved by the FDA for the treatment of progressive MS. Yes, it’s not like me to do any promotion on behalf of the drug companies, and I have written several lengthy articles on Ocrevus and the issues surrounding it (click here and here). But, just like politics, crippling diseases can make for strange bedfellows, and the idea of a Progressive MS Day seems pretty good to me regardless of where it was conceived. As patients and their loved ones struggling with this illness, let’s take hold of this day and make it our own.

So, what can you do to help spread the word? Well, you can start by using the fancy-schmancy Progressive MS Day Facebook frame on your Facebook profile picture. I must admit, being an avowed Facebook hater, I had no idea what a Facebook frame was, but I just managed to add it to my profile pic and I think it’s quite nifty indeed. Please follow the instructions on the below graphic to add the frame to your own profile pic, and it’ll be like we have all revealed ourselves to be members of one of the least influential secret societies on the planet.

In addition, please use the hashtag #ProgressiveMSDay on your social media posts regarding the event. That way, nefarious groups like the Russian intelligence services and Cambridge Analytica will be able to forever tag you as a person with a crippling illness.

Just to add my own Wheelchair Kamikaze twist to the day, I am requiring, with absolutely no exceptions, that everybody who reads this post compose a Progressive MS haiku and post it in the comments section of this blog or on my Facebook page, if that’s how you reached this blog post. If you cheat and don’t compose a haiku, I swear I will hunt you down, sneak up on you, and when you least expect it shout “Boogie Boogie Boogie” at you. Believe me, writing a Progressive MS Haiku is much more pleasant than having a surprise “Boogie Boogie Boogie” shouted at you. If you don’t believe me, just click on the video below:

For those who have forgotten the rules of writing a haiku, let me refresh your memory. Haiku is a Japanese form of poetry, composed of only three lines. The first line must be five syllables, the second seven syllables, and the final third line 5 syllables again. Easy peasy haiku squeezy. As luck would have it, “Progressive MS” is five syllables and therefore makes for an easy first or third line.

To get you started, here are a few Progressive MS haikus I composed myself. Please use the hashtag #ProgressiveMSHaiku if you post your own poetic creations on Facebook, Instagram, or Twitter.

Haiku #1
Progressive MS
Stole everything but my soul
You mother f*cker

Haiku #2
Progressive MS
Enough with the half-assed drugs
I want a damned cure

Haiku #3
Progressive MS
Stick my head in a blender
And please press purée

Haiku #4
Stripped of all pretense
I discovered my essence
Progressive MS

Right then, I’m sure you get the idea. Now let’s have at it…

Sunday, March 11, 2018

15 Years a Progressive MSer

You think back and it seems like a million years ago, or yesterday. The first Sunday of March 2003, an unusually cold day for that time of year. Despite the winter chill, you decide to take your beloved Labrador Retriever, Stella, for a long walk along the Hudson. After strolling about 2 miles on the paved path running next to the river, you turn homeward. You don’t return the same way you came but instead choose to take the city streets back to your wife, waiting in your apartment.

On the way home, you slowly notice that your right knee is buckling backward, causing a peculiar limp. It’s not painful as if with a sprain or bruise, but instead, a weird hitch that seems caused by weakness within the knee itself. As you walk further the limp becomes more pronounced, and the inside of your head starts feeling kind of fuzzy. It’s all very strange and unsettling. You know in your gut this isn't normal, that something fundamental has changed.

About two months later, after a disconcerting blur of doctor’s appointments and medical tests, you’re given a preliminary diagnosis of multiple sclerosis. It’s one week before your first wedding anniversary. You’re sad and disoriented and angry and frightened, very frightened. Though you’re still mostly ignorant about the disease itself, you instinctively know you've reached an unhappy line of demarcation. There will now be a time before the limp and after. Little do you suspect how stark a marker this will become, a deep impenetrable moat separating two entirely different lives, both lived in one lifetime.

Now, 15 years later, your old healthy life is receding faster and faster into the haze, like a dream remembered crisply upon awakening but lost to the ether by noon. After the limp appeared the disease hit fast and hard. No relapses and remissions for you, only progressing disability, a creeping paralysis. Less than four years after that cold day in March, the beast forced you to "retire" at the ripe old age of 43, just when your career was poised to go parabolic. A year later MS planted your ass firmly in a wheelchair. Fast forward 10 years to the present and your right side is dead weight. Your declining left side insists on following the same horrid script written by your right, like a bad sequel to a terrible movie. Somehow, on most days you outwit despair, focusing on whatever glimmers of hope the gaping abyss before you can’t hide. On other days the darkness wins out.

You remember that years before the limp you'd experienced a series of odd symptoms that defied explanation. In 1997 the doctors thought you might have a rare form of lupus, but the medical minds could never arrive at a conclusion, and during the five or six relatively quiet years after you pushed any concerns aside. On the whole, that would make it 21 years since things started going haywire. Your disease could be getting its bachelor’s degree by now. A BS in MS, or, more appropriately, a BS in BS. As an adult, you've been sick longer than you've been healthy. The gods must be crazy, and an indifferent universe could not care less.

You ponder all the things these wearisome years have taught you, from nuggets of wisdom to knowledge you’d rather not possess. You’d have been perfectly happy to live out your days not knowing that for some reason you quickly fall asleep in the noisy, claustrophobic confines of MRI machines, that you’d rather have a spinal tap than dental work, and that you have an innate ability to grasp complicated medical concepts and translate them into plain English. As hidden talents go, you have been fine with leaving that one undiscovered.

Then again, you always had a knack for cutting through the bullshit, and the reality is that most medical jargon exists primarily to confuse the public and hide the fact that large parts of the purportedly gleaming modern medical miracle machine are in reality constructed of chewing gum and chicken wire. You would relish being happily unaware of the fact that for some physicians medicine is indeed a calling, but for many others it is primarily a business. Just like any other job, some are very good at practicing medicine, but others just plain suck. What do you call somebody who graduates from medical school with a C- average? A doctor.

All the downtime that comes with being a cripple has provided you ample opportunity to dissect your long-lost healthy life and graced you with perspectives you likely would have otherwise never gleaned. You remember with deep regret all of the healthy time wasted on the small stuff, and you now see with crystal clarity that almost all of it was small stuff. If you could only have back half of the sleepless nights and anxiety-filled days vainly spent lamenting lost loves and missed opportunities. In retrospect, you see that new romances and promising circumstances inevitably came your way just as soon as you reluctantly let go of your negativity and allowed room for new people, places, and things. Our emotions are born of us, not we of them, and just as you now most often choose hope over despair, you could then have decided to seek contentment rather than wallow in self-imposed neurotic torment. Over the long run, most people are dealt an equal number of good and bad hands; it’s the way you choose to play them that determine the winners and losers. But just as youth is wasted on the young, health is wasted on the healthy.

You think of all the incredible souls you’ve met since your diagnosis, other MSers coping with the disease with their own mixture of poise and grit in the face of mounting indignities and physical insults. They have inspired you, commiserated with you, laughed and cried with you. You rue the toll you’ve seen the monster take on so many. You grieve for those who gave it their all but eventually succumbed. You remember each of them with perpetual sadness at their passing and mounting anger that more has not been done to put an end to this scourge. Treating but not curing is a great business model, but far too many human beings are left withering on the vine as the MS industry seems quite content with this paradigm, it's coffers overflowing.

The ripple effect of the disease is insidious, and you feel guilt at the impact your illness has had on your friends and loved ones. You are keenly aware of the palpable emotional pain felt by your old mom and dad when they see or hear about your ever compounding struggles, of the hidden disappointments experienced by your incredibly loyal wife who has watched her own dreams of a future filled with romance and adventure pilfered and plundered, of the unreturned emails and phone calls from friends left wondering why you choose to remain out of touch even though you hardly leave your apartment. You have no real answers for them, except that on some basic level you now understand why gravely wounded animals retreat into the brush to meet their fates alone.

Most 15 year anniversaries warrant some sort of celebration, but you don’t feel much like celebrating this one. You are grateful to still be here and to retain the functionality to write this essay, but having been struck with this disease is something you will never, ever get used to. Each day you awake to the shock that your dreams are not reality and your reality is not some demented dream. In instants without distraction, you wonder how much more of this you can take and even how much more of this you want to take? 

You somehow find ways to occupy yourself despite a growing alienation from the healthy world that surrounds you. You fight the envy you feel for those who walk and jog and gesticulate, utterly oblivious to their incredible good fortune at simply being able to do so. You listen to those tied in knots by troubles that you now realize are mere fripperies, and fight the urge to scream that you’d swap their plight for yours in half a heartbeat. You are not proud of these feelings, but there they are.

Most of all, you simply persevere. You try to make sense of it all, to tease some meaning from these last 15 years, to convince yourself that there is some method to this madness. You wonder if some long-ago actions taken or not taken, or decisions made or not made, might have led you down a path free from MS. You mourn what might have been, what almost was. You dig for nuggets of hope and reasons to believe, even if that means mining through vast mounds of existential detritus. 

Time and time again you ask yourself and the universe, “what’s the point?”, until you finally realize that the real question is “what’s the point of asking what’s the point?” You decide that if there are any answers, they are beyond the scope of your comprehension, and then you turn on the latest episode of The Walking Dead and start asking the really important questions, like how in the world you would charge your electric wheelchair during a zombie apocalypse? And, if you were to become a zombie, would you suddenly be able to walk? Or would you be one of The Rolling Dead?

Priorities, friends, priorities…

Here’s one of my favorite songs by the great American songwriter John Prine, the lyrics of which pretty much sum it all up for so many, sick and healthy alike. BTW, an “Angel from Montgomery” is what death row inmates used to call a governor’s stay of execution in the state of Alabama…