Wednesday, December 13, 2017

The End of CCSVI

“This is the way the world ends
Not with a bang but a whimper.”
T.S. Eliot

We hoped. We prayed (some of us did, anyway). We researched. We organized. The MS patient population and a few sympathetic practitioners stood up to the medical establishment, goddammit! I wrote forty blog posts about CCSVI (forty-one now). But, given what we know today, there’s something that must be said.
I was wrong.
We were wrong.
For those unfamiliar with this saga, the term CCSVI was coined by Dr. Paolo Zamboni of the University Ferrara, Italy, in 2008. The acronym stands for “chronic cerebrospinal venous insufficiency.” Zamboni theorized that restrictions in the veins that drain the central nervous system — the brain and spinal cord — contributed significantly to MS disease activity. Furthermore, he believed opening such restrictions via balloon angioplasty or the placing of cardiac stents could improve MS outcomes.
The medical establishment would have none of it. With few exceptions, the neurological community, a.k.a. MS doctors, rejected the concept. Many, like my neurologist, supported patients’ efforts to obtain this treatment, knowing that they had nothing better to offer us. But a handful of mainstream neurologists spoke out vigorously against any attempts to pursue CCSVI further.
Nevertheless, a few rogue medical professionals set up research projects and began treating patients for the condition. The medical establishment accused the rogues of acting irresponsibly, risking the health of MS patients, and perhaps worst of all, profiteering from misguided, gullible, vulnerable patients.
To this day, I insist I was only slightly misguided, but I was neither gullible nor vulnerable. I was not a victim. I was simply desperate.
Online patient groups arose organically and became vocal. We wanted to be treated immediately, not years down the road. A group of us patients possessed a scientific slant, and we formed an organization called the CCSVI Alliance, complete with a website called CCSVI.org. We organized the growing body of technical information both for and against the theory.
I must admit, however, that we were not impartial. We advocated for CCSVI. We had a positive bias, and this was reflected in our work. To our credit, the CCSVI Alliance eschewed the anecdotes, the miracle YouTube videos showing individuals rising from their wheelchairs. We sought out the studies and facts, such as they were. But all the scientific papers lacked one thing—the gold standard for potential treatments—placebo-controlled clinical trials.
Reacting to immense pressure from the patient community, mainstream organizations began funding such blinded trials. When the results of these trials didn’t support the theory, we questioned the trial designs and thus the outcomes (sometimes with justification, sometimes not). Finally, Dr. Zamboni himself began a blinded clinical trial, and the results became available a few weeks ago.
Dr. Zamboni’s team concluded that CCSVI treatment doesn’t work. “The procedure cannot be recommended for treatment of patients with MS; no further double-blinded clinical studies are needed.”
For a more detailed discussion of the trial results, I recommend the article written by the MS Research Australia website. I’ll leave it to other bloggers to dive into the weeds. Instead, I’ll address the effect that our pursuit of CCSVI has had on the MS population.
I had CCSVI procedures conducted not once but twice on the veins that drain my central nervous system. I approached these procedures hopeful but not confident. In 2010 I went to Brooklyn, and in 2011 to Albany. I experienced no benefit from either procedure. I experienced no problems either. I experienced nothing. Worldwide, thousands of patients were treated, with the number of procedures peaking in probably 2011 or 2012.
Then, as more and more patients saw no lasting benefit, the phenomenon slowly lost its momentum, and for the past several years very few doctors continued to treat, and very few patients sought them out. One could argue that CCSVI died years ago, but this is the final nail in the coffin, if you will. The founder of the movement has disavowed it. This is the way CCSVI ends, not with a bang but a whimper.
How do we keep something like this from happening again—keep patients from chasing ineffective treatments, keep precious research dollars from being wasted? We cure the damn disease, that’s how. Until such time, patients will take matters into their own hands and demand treatments before they are fully vetted. We will take risks. The odds are, for any given treatment, that the results will be unsatisfactory, but there is nothing so unsatisfactory as being told to sit down and be a good patient.
I’ll acknowledge that a certain segment of the MS population experienced significant and lasting improvement from their CCSVI treatments. I can’t explain that, and I don’t have any interest in doing so. To you folks, congratulations. For the rest of us, it’s time to move on.
With so many technological and organizational tools available to patients, so many lives being overwhelmed by progressive diseases, and a drug approval process that takes much too long, these patient-centered movements won’t stop. You can count on it.    

Tuesday, December 5, 2017

Listen to My Interview With Kate Milliken, MS Activist Rock Star

To hear this podcast: click here


This is Mitch Sturgeon who is a user of MyCounterpane.com, as well as the founder of enjoyingtheride.com. Are you living with MS, progressing and feeling scared about it? This podcast is for you.


Hellooooo Lean Into Lonely, our first podcast, where MCP founder Kate Milliken dives into deeply personal moments of lonely from the people she knows. Why? Because more and more, we at MyCounterpane understand that we are ALLL…
API.MYCOUNTERPANE.COM

Tuesday, November 21, 2017

“Remember, There Is Always Someone Worse off Than You:” Is This A Valid Coping Mechanism?

A Silhouette of Sadness
(Photo credit: Wikipedia)
We’ve all heard this platitude before, but I have some questions about it.

After all, isn’t it a perversion of human decency to use another person’s suffering to improve our own outlook? Shouldn’t the acknowledgment that others are suffering make us feel worse, not better? Does it demonstrate a lack of compassion that we psychologically benefit from recognizing the distress of others?

No, no, and no.

The use of this coping mechanism does not indicate a lack of compassion or empathy. Quite the opposite. Empathy is almost certainly extended to the person or persons being held up for comparison. This isn’t about cruelty. This is about recalibrating one's perspective.

To the extent that considering less fortunate people motivates us to think more clearly and optimistically about our situation, then this coping mechanism is valid. It probably shouldn’t be your primary coping mechanism, and definitely shouldn’t be your only coping mechanism. But, if you can use the situations of others to improve your own perspective on life, without hurting anyone else’s feelings, then it’s a good thing.

I know it works for me. I’m in a pretty bad way, but as I observe other people with severe illnesses or in dire circumstances, I often take solace in the fact that I enjoy many advantages over them. I know that sounds awful, but it isn’t. I’m simply recalibrating my perspective so as to stop feeling sorry for myself.

Let me turn the tables a little bit. Since I’m dealing with some nasty health issues, presumably with some degree of fortitude, I am aware that people may look at my situation and take solace in the fact that they are not as bad off as me. How do I feel about that?
Go for it. I certainly don’t begrudge anyone the comfort they may experience by comparing their challenges to mine.

Taking this concept one step further, if I were to find out today that I was going to die tomorrow, a big part of my coping mechanism would be to look back on how fortunate my life has been compared to the lives of others. I might say, “I enjoyed a better life than 99% of the people who ever lived before me.”

This has got me thinking. If I had 24 hours notice of my imminent demise, in addition to reflecting on a life well lived, I would also complete the following tasks, without delay:
  • clear my browser history.
  • show Kim where the money is stashed and how to pay the bills.
  • make an appointment at the crematorium.
  • write a short "afterward" to my finished but yet unpublished memoir and then upload the book to Amazon, so that I could die a published author.
  • eat an entire chocolate cake and wash it down with chocolate milk (whole, not skim).
  • change my Facebook status, to make it official.

Tuesday, November 14, 2017

Just a Couple of Things…


Made Another “Best Blogs” List


A company called MyTherapy, which makes a smart phone app that helps patients track their medications, recently compiled their list of 15 Excellent MS Blogs, and Enjoying the Ride made the cut. Check it out — and congratulations to the others who were mentioned.
A Programmer in the UK Comes to My Rescue 
I’ve developed a problem with mousing. Until recently, I could operate the right-click and left click buttons on my computer mouse. Lately, however, when my brain sends the command for either my index finger or my middle finger to click the appropriate mouse button, both fingers respond and both buttons are depressed. This tends to screw things up.
I can use my voice recognition system, Dragon NaturallySpeaking, to accomplish mouse clicks, but that has its drawbacks, primarily that I’m not always alone at my computer, and a constant cadence of "mouse click” and “mouse right click” could drive Kim insane. Since I use the right button so much less than the left, I looked for a program that would allow me to disable my right mouse button, but keep my left one active. I would then use Dragon NaturallySpeaking just for the right-click function.
I found what looked like a great program online. It’s shareware, meaning the developer charges no money for it. The program is called X-Mouse Button Control. Sure enough, there was an option to disable the mouse’s right button, and I selected it (by left clicking on it, ironically). Then I tested. When I clicked the right button, nothing happened. Excellent. However, when I gave the “mouse right click” command through Dragon, nothing happened either. Damn.
So, I wrote to the application developer, Phil, who lives in the UK, and asked if he could change his program so that I could accomplish my goal. Within a few minutes, he responded that he would give it a try. The next day, he reported that the changes had been made. It worked perfectly. I can now control my left button with my index finger and my right button with my voice, and it doesn’t matter what I do with my middle finger that rests on the right mouse button.
It’s refreshing to have a perfect stranger, from halfway around the world, respond so enthusiastically to a request like mine. Although this is shareware, it comes with a “donate” button, and donate I did.
Thanks, Phil.


Tuesday, November 7, 2017

Making My Bed

So, you think making your bed is a pain in the ass? Try making my bed (I suggest using the full-screen button on the bottom right of the video):


If you don't see the video above, click here to watch it on YouTube.

The blue inflatables can be found here
The brown inflatable can be found here.

Monday, November 6, 2017

500th Blog Post

Yep, this is the big five–oh–oh. I’ve been doing this for eight years now, since I stopped working in the summer of 2009.
That first year, I spit out 86 posts, 39 of which were autobiographical and entitled “My MS Story Chapter (one through 39).” That was also the year I started writing about CCSVI, the controversial vein-opening procedure for MS. With the CCSVI posts, I began to gather a significant number of readers, and my growth has only accelerated since then. I can’t count the number of deep friendships and important contacts that have resulted from this blog.
So, a big thank you to all who have stopped by over the years to read my little musings. Any positivity and good feelings I may have inspired with my writing, you folks have returned to me tenfold.
Here’s to the next 500 posts!


Tuesday, October 24, 2017

Hayfever Medicine for MS – Really?

There is, and has only ever been, one FDA approved treatment for primary progressive multiple sclerosis. It’s called Ocrevus, and I’m taking it. Every other drug/treatment I have employed in the last 16 years was off-label, rogue, underground, unapproved, unauthorized, unofficial, shady, under the table, or any combination of these. I’m about to do it again.
A few days ago, I stumbled across this article about an over-the-counter antihistamine called Clemastine Fumarate. It met with some success in a Phase II, randomized, controlled, double-blinded trial for people with MS. Supposedly, it encourages the body to repair damage done to the nerve coatings known as myelin.
Could it be that simple? Could I treat my MS with hayfever medicine? Almost certainly not, but the risk is so low and the potential rewards so high, I’m going to give it a try. First, I had to figure out where to buy the stuff.
At the dosage they used in the trial, I would have spent thousands of dollars per year, even at discount pharmacies, to get enough of this drug over-the-counter. So, I contacted my neurologist and asked if he could write me a prescription. He did, and I picked it up yesterday, and it has a $10 per month co-pay. That’s a little better.
The likeliest side effect is fatigue, and I can confirm as much after only a day on these tablets. Like many cold medicines, it makes me sleepy. The good news — that side effect should decrease over time.
If I sat back and simply followed the rules, I would have a long wait on this drug. I expect the drug company will run a Phase III trial, and if it is successful, they will petition the FDA for approval. Those two processes—trial and approval—could easily eat up five years. I can’t wait five years. I’ve been down this road many times with treatments that hadn’t made it all the way through FDA approval, and I haven’t had much luck. But I’m desperate, so here I go again…



Tuesday, October 17, 2017

Book Update

You’ve been so very patient. I announced here, a long time ago, that I was writing a book and it was almost done. Obviously, I lied.
Given that this is a memoir, and given that I’ll only have one chance to tell this story, I’ve been rewriting and editing and tweaking. Finally, I am only a couple weeks away from being finished, at which time I will start looking for an agent or a publisher. That process will take months, but if I get no bites I will self-publish next year. I promise!
As a reward for your patience, please enjoy this excerpt from the chapter entitled "Smells Like Money." 
***
    I was the youngest, born in October of 1963, five weeks to the day before the assassination of President Kennedy. For the remainder of my childhood years, Dad teased the men in town who weren’t lucky enough to have produced a son, let alone three, by offering his assistance, guaranteed boy, first try. When Mom heard him say this, she only rolled her eyes. On this subject, Dad was all talk.
Our little town was situated deep in the woods of Maine, the most densely forested state in the country. Tourists flocked to our picturesque coastline. Other than sportsmen, however, most visitors didn’t travel inland, and we preferred it that way.
People from away offended our sensibilities in countless ways, and we didn’t need their money. Our town did quite well, thank you, because we knew how to convert trees into paper, effectively spinning straw into gold.
Men like my maternal grandfather, Carl, cut and limbed trees at nearby forest operations. Pulp trucks loaded the timber and headed for the paper mill in the center of town. Every day this convoy paraded by our homes and businesses—a constant reminder of what drove the economy in our town, what put food on our tables, and where hundreds of our residents spent so much of their lives.
When the logs disappeared into the mill, men like my father and my paternal grandfather took over. They chipped, steamed, digested, washed, and bleached the fiber to a pulp. This pulp was then refined, colored, filtered, dried, cut, and wound into giant paper and tissue rolls, before being packaged and labeled. The finished products emerged from the other end of the mill where they were loaded into a separate fleet of trucks heading south. Always south. To the north there were nothing but more trees, potato fields, and the Canadian border.
Only the company’s top minds and most senior employees understood these complex processes. To everyone else, both workers and townspeople, it may as well have been magic. But the magic came at a price. The towering smokestacks emitted water vapor, soot, and airborne toxins in clouds of white, brown, or sometimes black. On clear days, this discharge blasted high and true, like a steam locomotive. On humid or drizzly days, however, it oozed out the top of the stacks, never rising far enough to be swept away by the prevailing winds. This viscous haze enveloped the town and permeated our homes.
Workers who picked up cigarettes and beer at Sampson’s grocery store or grabbed a bite at the Rose Bowl Restaurant wore the stench as a badge of honor rather than a source of shame. It meant each of them had a secure, high-paying job, presumably for life, unlike the store clerks and restaurant staff who waited on them.
At least a dozen towns in Maine smelled as bad or worse than we did. Rumford and Millinocket reeked, and Westbrook polluted Maine’s largest city, Portland. But no other mill town had a name with such an unfortunate rhyme. “Stinkin’ Lincoln!”
My father didn't put up with the insult. When people from away disparaged his town and his employer, he growled, “Smells like money,” and that would be the last word on the matter.  

Wednesday, October 4, 2017

Preserving My Identity

I've been asked how it is that I maintain my identity – how it is I keep MS from defining who I am.

To a large extent, I don't.

Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a bit more interesting than it otherwise would've been, but that was all.

As the disease began to have a profound effect on my daily activities such as walking and using my hands, it became more and more difficult to keep MS from shaping my personal identity. So I didn't fight it. I embraced it.

I am a husband with MS, a friend with MS, a brother and a father with MS. I am a blogger with MS. Note that MS doesn't supplant my identity; it enriches it. Don't get me wrong. I'm not saying that having MS is a good thing. It absolutely sucks. But embracing the fact that I have MS doesn't.

Granted, for some people with MS it may be important to keep the disease out of your public identity, often for reasons having to do with career preservation. I get that. The only advice I have for you, if you need any, is this. When MS needs a chunk of your time – whether for doctors’ appointments or naps – give it what it demands, then return to your other interests without apology or guilt. I did that for quite a few years, and I was largely successful.

I'm not only a guy with MS. For brief periods of time I’m able to put the disease out of my mind. The best distractions are quality television and movies, books, conversations, writing, or any task requiring concentration (even though my ability to concentrate is diminished). 


How do I identify myself in my dreams? It's a mishmash of walking Mitch and wheelchair Mitch, often switching back and forth indiscriminately.

I'd like to think that people I'm interacting with, at least for brief periods of time, can also forget about the disease. But to imagine that it's ever far removed from who I am would be an act of denial.

Please consider the notion that accepting these changes to your identity does not represent failure or defeat. It may simply be the best way to deal with a new reality.

I'm now that guy with MS, and being identified as such is not a bad thing. It's just a thing.

Wednesday, September 20, 2017

True Stories About Fingers and Toes

“Watch your toes. My wife says it hurts."

That’s my go-to line when I work my way through a crowd, and it serves two purposes. First, the space allotted for my safe passage widens a little. Second, it lets people in the crowd know that a human being, with a sense of humor, resides inside the crippled body being conveyed across the room by such an imposing, toe-flattening, wheeled contraption.

Despite the laughs my go-to statement generates, I speaketh the truth. I have run over Kim’s toes four times, and her consistent reaction leads me to believe that it hurts. The first three times, I directed one of my four iBOT wheelchair tires over her toes. That chair weighs about 300 pounds, and I weigh north of 200 pounds. In each instance, she expressed her disappointment in a clear manner, but no permanent damage resulted. No broken toes.

The fourth time I ran over Kim’s toes, I was again in my iBOT wheelchair, but I was in balance mode. So, instead of the considerable weight being distributed on four wheels, it was distributed on only two. We were in a crowded elevator on a cruise ship, and she wore only sandals. She calmly but urgently told me that I was on her toes, and I calmly but urgently moved off them. The other cruisers seemed mildly amused, not understanding how much pain Kim was in. Remarkably, no broken toes again.

Everyone is familiar with that famous saying, “Wheelchairs don’t run over people’s toes. People run over people’s toes.” I’m here to tell you that it’s a lie. A few weeks ago, while I lay in bed, Kim stood alongside my 425-pound Permobil wheelchair, grasped the joystick, and maneuvered the chair around our bedroom. Through no fault of her own, the chair decided to run over one of her feet. She screamed, tried to pull her toe out from under the wheelchair, pulled harder, succeeded, and flew headlong across the room into the opposite wall, crumbling to the floor.

Not knowing what the wheelchair had done to my wife, I was confused by her unusual behavior. She explained that the God Damn wheelchair had run over her foot. I was no longer confused. Although this was the most dramatic of the five foot-flattenings, Kim was again no worse for the wear.

What about strangers’ toes? How many of them have I run over? Too many to count. When I can, I apologize. But often I’m in a mob, and I don’t even see the person who screams out in pain. Once in a while, the victim apologizes to me. Go figure.


That’s it for toes. Now, let’s move on to fingers. Why would anyone put their fingers under a wheelchair tire? They wouldn’t. Why would anyone put their fingers in the mouth of a person in a wheelchair? Allow me to explain.

Today, the food I eat falls into one of three categories. There are some foods I can still put in my mouth without assistance, like wraps. There are meals that my OBI dining assistant helps me with. And there are foods that Kim feeds me from her hand to my mouth, like ham and cheese sandwiches.

Last week, Kim was feeding me just such a sandwich, and it got down to the end. Because I prefer larger bites of food, and because Kim is a nice person, she intended to have me take the remainder of the sandwich as a single bite. Understandably, Kim fears that someday I will choke on one of my large bites of food, and the Heimlich maneuver won’t be easy, so she prefers I take smaller bites. Because I am a little afraid of my wife, I intended to take the remainder of the sandwich in two bites.

Somehow, her fingers passed below the maxillary incisors in my upper jaw and the mandibular incisors in my lower jaw. Unaware of this intrusion, I bit down hard so as to make a clean cut halfway through the remaining portion of the sandwich. Kim screamed and pulled her bloodied finger out of my mouth.

The bleeding stopped soon enough, however, and Kim didn’t lose the tip of her finger, although I’m afraid that fingernail won’t survive the winter.

Now, we have new eating procedures. Kim never lets her fingers cross the imaginary line between my upper and lower teeth. I never bite down hard until I know that my teeth are shredding food as opposed to human flesh. Seems to be working well so far.

For all of you folks who think being my caregiver is a glamorous job, filled with witty repartee and intellectual give-and-take, think again. It’s fraught with peril. But we learn from every mistake, and for the time being, Kim still has all her fingers and all her toes.