An Alternative to Hope

The issue of my worsening disability rarely comes up in polite conversation. On those occasions when it does, well-intentioned people, restrained by propriety, offer sentiments like, “One day they’ll find a cure, Mitch. Don’t give up hope.”

Hope. It is a concept no less hallowed than love, peace, kindness, and for some people, faith. I don’t question anyone’s sincerity when they prescribe it for me. Because I suffer from a chronic, incurable disease, however, I find hope routinely over-promises and under-delivers. In my long list of coping mechanisms, hope ranks near the bottom.

I was diagnosed in 2001, purchased my first wheelchair in 2008, and by 2016 I could best be described as a quadriplegic. My tormentor is a nasty strain of MS called primary progressive multiple sclerosis, and it’s kicking my ass.

By our nature, humans are drawn more to stories than statistics. We are motivated by narratives that touch our heart, rather than truths that constrain our dreams. Here’s the truth: modern medicine is chipping away at the edges of illnesses like MS, Parkinson’s, ALS, Alzheimer’s, and more, but we are not finding cures.  Our narratives still don’t produce happy endings. For people with chronic, incurable diseases like mine, hope is not justified by reality.

I have subjected myself to so many treatments over the years — several out of pure desperation — all to no avail. My disease marches on. If I had invested emotionally in the success of these trials, I would have had my heart broken time and again. After one of my early treatment failures, I discussed the concept of hope with a fellow MS patient who suggested, “If you don’t have hope, you don’t have anything, right?”

He could not have been more wrong. As the years passed, and the disease ravaged my body, I remained in relatively good spirits, even though I knew I might never get better. I came to understand that a lack of hope does not necessarily lead to hopelessness. Sometimes acceptance fills the void.

Hope is the sexier cousin of acceptance. On occasion, it produces spectacular results. Books and songs have been written about the power of hope. Yet it is capricious. Acceptance, on the other hand, does its work in the background, steady and true. I learned the power of acceptance from my mother. She lived in a wheelchair for 39 years, not because of MS but a spinal cord injury.

With acceptance, I don’t waste emotional energy lamenting what might have been, envy what healthy people can accomplish, or ask “why me?” With acceptance, I no longer consider my old life as the normal I must return to. Instead, I consider my current life as the normal I must adjust to.

I’m grateful for having enjoyed as many healthy years as I did, for my family and friends, for technology, which helps me navigate the world without the ability to move my muscles, and so much more.

Despite my pragmatism, I am not devoid of all hope. I keep one ear to the MS research world. I evaluate each potential treatment on its merits. During these assessments, I sometimes, against my better judgment, imagine what success would look like. Hope is such an opportunistic emotion that it injects itself where it’s not wanted. But, to the extent I can, I keep hope at arm’s length. Yes, I’m confident that a cure will be found one day. I just doubt it will come soon enough for me. If I’m wrong, and a cure bursts upon the scene, I’ll gladly recant my position on hope, admit my mistake, and make a heartfelt apology to anyone I led astray.

Give hope a chance? Sure, if you are so inclined. But if you’re in a situation like mine, I say give acceptance a chance. It’s a powerful alternative.

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.    

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.

MyCounterpane

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…

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

(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.

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.

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.

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!

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…

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.  

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.

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.

A Better Way to Weigh

I graduated high school at a lean, muscular, 180 pounds. It’s been a struggle ever since. But I kept things under control by eating less, exercising more, and monitoring my weight by stepping on scales. Today, I exercise not at all, and monitoring my weight has been a logistical challenge because the wheelchair keeps getting in my way. And I love to eat. Given all that I’m going through, don’t I deserve to eat what I want? (Hint: the correct answer is no.)

For a number of years, I utilized a local rehab hospital where I transferred to a special chair-scale. That involved making an appointment, driving across town, and bothering a nurse. After a while, the transfers became difficult, and I moved on.

I found another hospital with a different type of wheelchair scale — one I could drive up onto. I only needed to weigh my empty wheelchair once, and do the math. This worked for several years. As with the first hospital, however, I needed to make an appointment, have Kim drive me across town, and bother a nurse. When I bought my new Permobil wheelchair in December of 2016, the wheelbase was too long to fit on the wheelchair scale.

In the spring of this year I found a chemical engineering classmate of mine who is the mill manager at a local paper mill. He had a large floor scale in his receiving department and was good enough to allow me to use  it. But, once again, I had to make an appointment, bother a busy person, and have Kim drive me across town.

A few days ago, we figured out a way to weigh me at home. Hallelujah!

I purchased a small crane scale off Amazon, and Kim inserted it between my overhead lift and the sling I sit in for transfers. We can read the number off the scale, and I know my weight instantly without making an appointment, bothering a busy person other than Kim, or driving across town.

It’s little victories like this that constitute the forward portion of my "one step forward and two steps back" life.

My new problem? Now I have no excuse for failing to maintain a healthy weight.

Ten Obscure Activities I Miss Because of MS

There are obvious things I miss: walking, driving, taking care of myself in so many ways. But here are ten more obscure activities that I wish I could still do on my own.

Breaking a sweat — I can no longer get my heart rate up high enough to break a sweat. I can’t stand to sit in the sun, so I don’t break a sweat that way either. I used to like that feeling once in a while.

Blending in — Just once, it would be nice to blend in with the crowd. When you’re in a wheelchair, you’re either overlooked (not the same as blending in), or you stick out.

Sitting in the stands at a sporting event — I love to go see the Red Sox and Patriots play, but I can’t just tag along if friends have tickets. I can’t purchase tickets on the secondary markets such as eBay or Ace Tickets. I either get wheelchair accessible tickets through the ticket office, or I watch at home (or, there were those three times I got myself into a luxury box).

Pondering the future — I can’t imagine what life will be like more than a year or two in the future, so we don’t make long-range plans other than having our home as accessible as possible and our finances ready for any eventuality. We don’t talk about what we will do when Kim retires, for example.

Swatting flies — Luckily, I live in an area without many nuisance flies. But once in a while, a housefly or a mosquito torments me, and I have little recourse. Bastards.

Removing credit cards and paper money from my wallet — It’s not a big deal, because clerks are glad to help me out, but it sure would be nice to use my credit card or handle cash on my own.

Cleaning my sunglasses — Some people are perfectly content to wear sunglasses with smudges all over the lenses. I don’t fall in that category, and my glasses tend to have more smudges than normal because I handle them so clumsily.

Wiping or blowing my nose — I don’t get many colds, but when I do, it gets messy.

Sleeping alone — I hesitate to mention this one, because I know there are people out there who are tired of sleeping alone. My point is this. Because of my disability, Kim can’t sleep away from home. She can’t go on business trips, weekends away with friends, etc. I wish she could.

Flossing — You know that wonderful feeling you get after flossing? I wish… No, I can’t do this. I can’t lie to all of you. I never flossed before MS, and I never floss now. Don’t tell my dental hygienist. What she doesn’t know…


For having read this far, you get a bonus list:

Five Activities You Might Be Surprised I Can Still Do

Taking a nap — My mother was in a wheelchair, and she didn’t have any way to comfortably take a nap during the day. But modern wheelchairs recline at the push of a button. To prove it, I’m going to take a nap before I get to the end of this…

Going out alone for lunch — Because I live in such a busy neighborhood, I have a choice of places I can go for lunch. It’s getting more difficult to get the food from plate to mouth, but I still have a few lunch items that work for me.

Controlling the lights, audio/video/computer/cell phone in my house, with ease — If you’re not aware of how I do this, read my blog post here.

Meeting people — I meet so many people online or in my neighborhood, I have trouble keeping track of them. I’m not lonely. Not even close.

Sitting by the ocean — In my neighborhood, I have at least five awesome places where I can sit by the ocean.

Feeling good about my life — I’m not in denial. I’m not happy I have MS. But when I compare my life to the lives that people have lived for thousands of years, or the lives millions of people are living at this very moment, I’ve got nothing to complain about.

On My Own

My daughter and son-in-law moved out this summer, with our blessing and best wishes. This left Kim and I empty-nesters, which changes things.

I didn’t feel the effects until Monday, when Kim went back to work as a middle school guidance counselor after having a couple of months off. My disease is steadily progressing, and my abilities are only declining at the same time less people are around to help me. The challenges resulting from this living arrangement will require a combination of financial investment, ingenuity, and organizational skills. You know — stuff an engineer does.

Financial

I’m going to invest in items like automatic door openers, at least for my front and back doors.  Also, I’m going to hire some help — home care professionals — to stop in a few hours a week.

Ingenuity

Kim and I are brainstorming ways for her to prepare my lunches in such a way that I can feed myself. Another problem we haven’t figured out yet is how I can put my coat on and take it off once the weather gets colder. If we don’t solve that one, I’ll be stuck in the house during Kim's work hours in the winter — inconvenient but not catastrophic.

Organization

I put together a checklist that I’ll look over before Kim leaves for work in the morning, to make sure everything is set up as well as it can be for me. Here’s a partial look at that list:

• Lunch items all set up for me
• a drink with a straw in it set up at the table
• a couple of snacks ready to go
• eyedrops where I can reach them
• sunglasses where I can reach them
• accessible scissors for opening packages
• remote controls
• windows open or closed according to the weather
• make sure I can reach the device I currently wrestle with to get back door opened and closed
• medications ready
• dog and cat fed and watered
• dog has on her invisible fence collar
• my cell phone in good position and coupled with computer
• several more items, some of which modesty prevents me from detailing

Note that all these items are addressed only after Kim gets me out of bed, washed, groomed, dressed, and otherwise presentable.

The good news is that Kim is only a few minutes away at work. My goal is to not bother her, but it’s comforting to know she can be home quickly if she needs to.

I’ve managed considerably more complex engineering projects over the years. This should be a piece of cake.

Ocrevus—My Latest Attempt to Stem the Tide

Ocrevus probably won’t work for me. It's best suited for younger patients with less disability, and it's more effective for people with active lesions, which I don’t have.

But I’ve got nothing else to try.

And, if it does work, even a little, wouldn't that be a wonderful thing?

Ocrevus is the first drug to gain FDA approval in the United States for the treatment of primary progressive multiple sclerosis, my variety of MS. Its predecessor, Rituxan, has been used off label for years with some anecdotal evidence of success. In 2005 through 2009 I participated in a clinical trial for Rituxan, and I used it off-label afterward until my insurance company refused to pay for more. I experienced some reduction in the speed of disease progression. But I was younger, and I had less disability, so I don’t expect to pick up where I left off.

There’s a bit of controversy surrounding this drug. Some people speculate that if the patent had not run out on Rituxan, the pharmaceutical company, Genentech, would have run another trial of that drug years ago, and it might have been available sooner and at a lower price than Ocrevus. Company officials counter that the differences between Rituxan and Ocrevus are the reason why one drug failed a clinical trial and the other passed.

If you want to get into the details of this argument, I recommend reading this article from my friend the Wheelchair Kamikaze.

I had my first 300 mg IV infusion of Ocrevus on July 19, and my second 300 mg infusion today, two weeks later. I was at the clinic for about five and a half hours each time. Every six months, for an indefinite period, I will receive a single 600 mg infusion. The side effects are minimal.  The nurse had to stop my first infusion for about 20 minutes when I started getting itchiness around my head. The second infusion had no incidences. The drug is not without risks, but given my level of disability, I scoff at its risk profile.

The cost? I will be responsible only for a co-pay and possible deductible, but my insurance company will be on the hook for about $65,000 a year.

When will I know if it's helping?  Ask me this time next year. It takes that long to notice changes in my disease progression.

Ocrevus probably won’t work for me, but I'm a desperate man.  I'll be carrying my 99 pounds of skepticism and 1 pound of hope with me to every infusion. Well, actually, Kim will carry a large share of the load. It's too much for me alone.

A Serendipitous Encounter

Serendipity: finding valuable or agreeable things not sought for.

The hostess at our favorite restaurant, Snow Squall, seated us three tables away from the other couple. They were about our age, maybe a few years younger. In their case, she was the wheelchair user, and he was the walker.

There was no way I could just let this go.

“I’m going to speak to them. I’ll be right back,” I said to Kim.

I approached the couple and began, “Excuse me. I don’t see a lot of wheelchair users around here, and I just wanted to say hello."

The lady in the wheelchair turned to me. She had dark hair like my mother and glasses like my mother.   Her level of disability — I could tell from her movements – was just like my mother's. And her smile, yeah, same smile. Of course, I didn’t lead with that comparison.

I learned they were passing through on their way from Ontario to visit relatives in Maritime Canada. They had selected this restaurant at random.

After a bit more small talk, I blurted out, “I have MS.”

“I was in a car accident six years ago. Injured my C5 – C6 vertebrae, eh” she replied.

My mother injured her C5 – C6 vertebrae. I let that slip out. I let the other stuff about her similarity to my mother slip out. I apologized for being creepy. She didn’t seem to mind.

The conversation was so interesting that I took a chance and said, “Would you like company for dinner, or would you prefer to dine privately?”

Both the husband and wife responded enthusiastically that we should join them. I called Kim over.

“We are Mitch and Kim, by the way.”

“Bill and Paulette.”

We enjoyed a lovely dinner, where we aired similar grievances about how disabled-unfriendly the world can be, but agreed that there’s never been a better time in history to be a wheelchair user. Bill encouraged me to speak with Paulette about flying on airplanes and going on cruises. She was only comfortable traveling to places by automobile. We compared and contrasted our countries' healthcare systems. We exchanged information about various adaptations each of us had employed. Their common theme was that Bill was handy and could build anything. Our common theme was that I am a techie, and I could buy and program things. Paulette and I shared the good fortune of having healthy spouses who undertook their caregiving responsibilities with equal doses of energy and love.

As we settled our checks, I invited Bill and Paulette to our house, a couple of blocks away, to continue the conversation and for me to show off all my adaptability toys. They accepted and stayed for an hour. I told them about my blog and showed them pictures of my mother. We exchanged email addresses and will almost certainly never see one another again, although I hope we stay in touch electronically.

Sometimes it pays off to get out of your comfort zone, walk up to complete strangers, and start talking to them.

Serendipity indeed.

Summer Cruise 2017 – Part 4 of 4 – Independence Days

This was billed as the Independence Day cruise. We would dock overnight in Halifax, Nova Scotia for Canada Day, July 1, and we would dock overnight in Boston for America’s Independence Day, July 4. Each city would feature celebrations and fireworks. I love fireworks. Not everyone feels the same way. Can someone please explain that to me?

Halifax

When we pulled into Halifax on the morning of July 1, it was foggy and drizzly, and none too warm. We put on our long pants and light jackets and headed out into the city. What a wonderful surprise Halifax turned out to be. The waterfront had been redeveloped. There were restaurants, stores, brewpubs, condominiums, and boats. Lots of boats.

Not far from the ship, we stumbled upon a rib cookoff, part of the Canada Day celebration. We had never seen such an event on that scale before. These vendors were serious. They displayed their trophies prominently and had huge advertising. As we wandered about, we began to appreciate the love these Canadians felt for their country. What a festive mood they set.

After partaking of butter-dipped corn on the cob and splitting a rack of ribs, Kim and I left the cookoff and found ourselves in a beer garden. We harvested a couple of IPAs, ripe on the vine. Our plan was to continue through the city for the remainder of the day and stay out late for the fireworks. The weather discouraged us, and we returned to the cruise ship by late afternoon.

Around fireworks time, we gathered with others on the ship to view the show from a distance. We were too far away, and the fog was too thick, so, although we enjoyed Halifax during the day, I didn’t scratch my fireworks itch.

Boston

Boston was a whole ‘nother story. We strolled off the ship shortly after lunch and were greeted by sunshine and blue skies. We walked a couple hundred yards to the Silver Line bus stop. As we waited for the bus, we realized we had no cash for fare. Kim spotted an ATM machine and charmed five $20 bills out of it. When the bus pulled up to the stop, we asked the driver if he could break a twenty for us, and he said, “Never mind. You can ride for free today.” And thus began a great day in Boston.

The Silver Line dropped us at South Station, where we met up with Randi and Al, who live in the city. They are the sort of friends who drop everything and entertain us whenever we get to Boston.

The four of us made a quick plan for the day and set out by foot on something called the Greenway, a lovely walking path along on what used to be an inner-city highway. We ended up in one of Kim and my favorite areas of Boston — Quincy Market. There, we enjoyed a cold drink, several talented street performers, and the general positive vibe of Boston on a sunny July 4.

From Quincy Market, we walked a few city blocks to the nearest Red Line station, purchased subway passes with our credit card, and headed across the Charles River to the MIT campus in Cambridge. We wandered around that fine city until our 7:30 reservations at Legal Seafood. We enjoyed a wonderful meal with Randi and Al then mosied toward the Charles River to stake out our spot for the fireworks.

When the first fireworks began, I found myself behind a tree, and could barely see the explosions. There were people all around us, and of course, the good spots were already occupied. Randi, Al, and Kim squirmed their way into decent viewing positions. I dove into the crowd of standing people in my wheelchair — a move that would typically result in the wheelchair occupant being face-to-face with butts not fireworks. Instead, I elevated as high I could in my iBOT and found myself in perfect viewing position.

The fireworks shot off directly in front of us so that the sounds rattled our eardrums and vibrated our breastbones. My itch was thoroughly scratched. At the end of the show, we said our goodbyes to Randi and Al. We headed, along with thousands of other people, to the Kendall station on the Red Line. The city had prepared well for the onslaught of riders, and soon we were on the subway and headed back toward the ship. At 12:13 AM, now on July 5, Kim looked up and noticed the time on the clock inside the subway car. She turned to me and said, “Happy Anniversary,” loud enough for others to hear.

“Oh, look at that,” I replied. “Happy Anniversary to you as well.” We kissed. Everyone in the subway car wished us a happy anniversary. Before we knew it, the Silver Line had dropped us off in front of our ship, exhausted, but in a good way.

Note: the kitchen made us this anniversary cake at the evening meal later that day.

Being part of celebrations in two great cities made this cruise memorable. But doing it as a wheelchair user, someone whose independence has eroded over the years, was extra special. This cruise was my own, or rather our own, Independence Day celebration.

Thanks for reading about our most recent cruise. If you have specific questions about this cruise or disabled travel in general, don’t hesitate to contact me through the comments section of this blog post or by clicking here.

click here for part 1

Summer Cruise 2017 – Part 3 –The Ship's Crew

The Celebrity Summit holds about 2450 passengers and 1000 crew. We often take the crew for granted. They work seven days a week for weeks on end and become a part of the ship to us. Almost invisible. On this cruise, I made an effort to connect with these individuals.

We sat at the same table for dinner most nights, so we had the same waiter, Adi from Indonesia, a most capable and engaging fellow. At each meal, he would take the four–compartment tray from my OBI dining assistant, cut my food up into the appropriately sized bites, and serve my dinner in the special tray. The first night I dined in my iBOT wheelchair, I showed him how I could rise up on 2 wheels. He was beside himself and asked me to do it again so everyone could see. I was happy to oblige.

Our assistant waiter, or waitress in this case, was known to us only as B, from Thailand. Her twin sister, A, worked a few sections over. To me, their proper names, as indicated on their name tags, were an unpronounceable collection of too many consonants and not enough vowels, so we appreciated the nicknames. B was so friendly and talkative that I got the feeling we sometimes caused her to fall behind, and she would shuffle off in a big hurry, but with smile intact.

There was a talented duo that played different venues each day — her on vocals and him on guitar. During one of their breaks at the Sunset Bar, our favorite outdoor watering hole, I struck up a conversation with the singer.

“I love your voice,” I began.

“Thank you so much,” she replied, flashing the smile she must’ve flashed the last thousand times she had received this compliment.

“Are you here just this week?” I asked.

“No, we have an 8-week contract on this ship.”

I then asked where else in the world the ship would be taking her over the next two months. She said, “A lot of Bermuda.”

She was friendly and receptive to my questions, so I went in for the kill. “Everyone wants to know — are you two a couple?”

“No,” she laughed. “We’ve been friends a long time, and most people assume we are a couple. In fact, the cruise ship provided us with only a single room at first.”

I asked about how difficult it was to score a gig like this, and she explained that cruise ship experience is prime resume material, and that these contracts are highly competitive. This confirmed my impression that the entertainment on cruise ships is top-notch.

One day, I set up my computer at a table in the café so I could work on my book and look out at the ocean. I heard someone asking me in a strong Eastern European accent, “Are you making some sort of announcement?”

I turned to see a smiling lady in her 20s, removing dirty dishes from the next table. I said, “Excuse me?”

“You have a microphone. Are you making an announcement?” She giggled.

“No,” I laughed back at her. “I’m unable to type, so I speak to my computer through this microphone.”

Her eyes lit up, and she moved closer. “Are you a writer?”

I’m reluctant to self-identify that way, but she seemed so excited at the prospect that I responded, “Yes, I am.”

She couldn’t contain herself. “I am writer too. I have been published in Ukraine.”

We discussed our various writing projects, and she became intrigued by the premise of my book. She asked if she could send me some sample writing that she had attempted in English, and I let her know I would be more than happy to work with her. I haven’t seen anything yet, but I hope to.

Although the crew is mostly international, the captain of the Celebrity Summit is Kate McCue — the first female American captain of a mega cruise ship. She introduced herself to the passengers at the main theater on the second night of the cruise. At only 37 years old, and looking stunning in her high heels and evening gown, she didn’t fit the stereotype for a ship’s captain.

Midway through the week Kim and I had some problems with the patient lift we had brought along to transfer me from wheelchair to bed, etc. Kim would pump on the lift arm and raise me up in the air. But as soon as she stopped pumping, I would slowly lose altitude. As the week progressed, this problem became more pronounced, to the point where she couldn’t stop pumping at all.

As we approached the port of call in Portland, Maine, where we live, I called my friend Darcy. I asked if I could borrow her patient lift for the remainder of the cruise. She agreed, and we arranged the handoff.

When Kim and I attempted to exit the ship in Portland, with the broken lift in tow, the crew stopped us, even though we had informed them a couple days ahead of time. Kim suggested that I go ahead and exit the ship and wait for her at the bottom of the ramp. I was causing a bit of a traffic jam.

After I had waited for about 20 minutes on the dock, a uniformed employee approached me. She was thin and wore aviator sunglasses. “Can I help you with anything,” she asked. The entire crew was so helpful on this cruise, and I had been asked this question so many times that I almost declined out of habit.

Then I looked down at her name tag and it read, Captain Kate.

“Perhaps there is something you can do. We are trying to get our broken lift off the ship so we can bring a replacement on board, but my wife has been trying to get clearance for almost half an hour now.”

“I’m aware of that request, and I thought it had been taken care of. I'm sorry. Let me see what I can do.”

She turned and looked up the ramp and said, “Is that your wife coming down the ramp with a lift right now?”

“You’re good,” I joked.

As Kim approached us with the broken lift, I introduced her to Captain Kate, and we complemented the Captain on a well-run ship (this incident being the exception).

I texted Darcy’s husband, Tim, and he met us at the ship with the replacement lift. I don’t know what we would’ve done if not for Darcy and Tim’s help.

I’m intrigued by the life that cruise ship workers lead, and I took every opportunity to engage them in conversation. I was not disappointed.

Click here for a sampling of what life is like for workers on a cruise ship.

click here for part 4
click here for part 1

Summer Cruise 2017 – Part 2 – Accessibility Challenges Don't Phase Us

If I had known the wheelchair accessibility shortcomings of the Celebrity Summit, I would not have booked it for a cruise. That would have been unfortunate, however, because we had a great time.

This was our third cruise. We found cruises #1 and #2 to be the most wheelchair accessible vacations we had ever been on. But those were larger and newer ships. So, although we were disappointed with the accessibility of the Summit, we weren’t surprised.

Before I delve into the deficiencies, it’s important to note that one of the primary reasons we chose this cruise itinerary was because it ran out of Bayonne, New Jersey. This meant we didn’t have to fly, which was, itself, an accessibility benefit.

Here are some of the challenges we faced:

No automatic door openers. Unlike the other ships, this one had no open buttons for cabin, cabin bathroom, public restrooms, or toilet stalls within public restrooms. I couldn’t get into or out of our cabin without Kim’s assistance. I couldn’t use the public restrooms without Kim’s assistance.

Tall and uneven thresholds all over the ship. I have a stud installed in the bottom of my wheelchair which couples with a receiver on the floor of my wheelchair van, safely locking me in place. I’ve had this for several months now, and it never bothered me until this trip. As I moved about the ship on that first day, this protrusion became caught up on many of the thresholds.

We called the maintenance department on the ship to help us come up with a solution. After surveying the situation, the maintenance man decided that the stud could be unscrewed, but he asked us to sign a waiver in case he broke something. We signed it. After removing the stud, I still found the thresholds jarring but no longer inaccessible.

Tender boats were not wheelchair accessible. We visited seven different ports. Five of them had docks, but at two ports, Bar Harbor and Newport, the ship had to anchor offshore. Small tender boats were employed to shuttle passengers back and forth between the ship and shore. On my previous cruises, the transition from ship to tender was wheelchair accessible. On the Summit, this was not the case. There were about five steps down into the tender boat.

On the second day of the cruise, Kim and I packed a bag to spend the day on Bar Harbor. We headed down to the deck where people were boarding tender boats. When we arrived at the debarkation point, Kim scoped out the situation and saw the steps. The crew expressed their regrets that the tender was not wheelchair accessible, and I wouldn’t be able to go into Bar Harbor. I explained to them that the iBOT, which I was sitting in at the time, could indeed climb stairs, and so I intended to go to shore.

“We will first have to check with our safety officer,” they explained.

“Fair enough,” I replied. “Let your safety officer know that I’m willing to sign a waiver.”

We decided to eat breakfast and check back later to hear the safety officer’s decision. We went to the breakfast buffet on the 10^th floor, filled our plates with tasty morsels, and sat on an outside deck, where we were afforded an amazing view of Bar Harbor.

We had visited this tourist mecca so many times in our lives, but we had never seen the view from this perspective. There were two other large cruise liners in town, and we knew things would be crazy. We soon lost our interest in fighting the crowds in Bar Harbor and decided we would spend the day on the relatively empty ship. By the time we returned to the debarkation station to let them know that we were no longer interested, the crew had changed over, and nobody knew what we are talking about.

A few days later, in Newport, Rhode Island, we gladly stayed on the ship and enjoyed its amenities.

These accessibility disappointments detracted from our enjoyment but didn’t ruin the vacation for us. I’ll consider this a lesson learned and avoid older and smaller cruise ships in the future. In my next blog post, I’ll focus on some of the positives about this vacation, of which there were many.

click here for part 3
click here for Part 1