Tuesday, January 16, 2018

Home Invasion

One morning, a couple of weeks ago, Kim refused to get me out of bed, showered, dressed, and ready for the day, like she always had. Instead, she fed me a piece of toast and poured a glass of juice down my throat. She then wished me luck and headed out the door, leaving me helpless in my bed.  
Forty-five minutes later I was startled when someone opened the front door. I heard footsteps coming toward my bedroom. There was nothing I could do, other than scream out…
Bonjour, mon ami.
Bonjour, Mr. Mitchell.
It wasn’t an intruder after all. It was my new personal care assistant, who hails from The Congo, where French was his first language.
Taking care of me, 24/7, can be overwhelming, so Kim and I had decided to hire some help. I began my research trying to determine if the state government, federal government, or medical insurance would subsidize in-home personal care. It turns out I have too many assets and too much income to qualify for assistance—a mixed blessing if ever there was one—and medical insurance simply does not cover this service.
Quite a number of businesses provide home care assistance for elderly people who are trying to avoid the dreaded nursing home. I targeted those companies. They have rules. One company required that two assistants be present, for safety reasons, if the attendant needed to use any kind of lift system to transfer the patient from bed to wheelchair, for example. At the hourly rates they charge, this was insane. Eventually I found a company which didn’t have that restriction for my type of lift equipment.
Like most of these companies, the one I hired has minimum hours requirements. To get the best rate, I need to have the helper here at least four hours per day, two days per week. They spend about an hour and a half getting me up, showered, dressed, etc., and then they spend the rest of the time doing light housework, helping me with some exercises/stretches, and feeding me lunch.
These first few weeks have generally gone well, with a few bumps. The attendant might ask me, “Where do you keep the broom.”
“I have no idea.”
“How do I start the dryer?”
“I have no idea.”
And so on…
This is the first house where I was so disabled when I moved in that I’ve never done any of the cleaning.
I hadn't realized how long it took Kim and me to perfect our morning routines. Trying to explain each little step in the process to my caregiver is tiresome for both of us, but we get a bit better at it each session. 

I’ll write more about the fascinating immigrants I have met already, once I get their permissions. Suffice it to say, they are first rate individuals, and they are making Kim and my lives better.

Wednesday, January 3, 2018

Annual Report 2017

Sixteen years is a long time to have MS. Sixteen is not a big number, however. Let’s think of it as 5844 days or 140,252 hours. Now the numbers are getting impressive. Why stop here? I’ve had MS for 8,415,130 minutes or upwards of 504,907,776 seconds. That’s a lot of seconds to have had MS, and I didn’t skip a single one of them.
Welcome to my annual post where I take a moment to consider what I’ve gained and lost in the past year, and what changes may await me in the coming one. As you know, I try to strike a balance. I don’t sugarcoat my condition, but neither do I focus only on the negative. And I reserve the right to inject humor no matter how serious the topic.
So, how did 2017 treat me? Could’ve been better, much better. Could’ve been worse, so much worse.

2017 Negatives:
  • Again this year, the negatives column is all about increased difficulty getting food and drink into my mouth, due to arm and hand weakness. If a year ago I needed assistance with 50% of my bites and sips, now it's 75%.
  • Having more difficulty operating the computer mouse and wheelchair controls, operating general buttons and knobs, opening doors, or holding items in my hands.
2017 Positives:
  • Physical therapy continued to help me maintain the strength and flexibility in my arms and shoulders.
  • Obtained an OBI robotic feeding assistant.
  • Published my 500th blog post.
  • Began treatment with a very expensive drug called Ocrelizumab. Although it is the first drug ever approved for primary progressive multiple sclerosis (yeah), it probably won’t work for people with advanced disability like me (boo).
  • Also began treatment with an over-the-counter antihistamine called Clemastine Fumarate, which showed some benefit for progressive patients in a phase II trial (yeah). However, many drugs look good in phase II but end up not being effective for the larger population (boo).
  • I made great progress on my book throughout the year. I now have query letters and proposals out to dozens of agents and publishers. If none of them bite, I'll be ready to self-publish by summer.
  • Kim's home business continued to be profitable. Most hobbies cost money. Her hobby makes money. Because of these profits, we went on two cruises.
  • Children are all out of the house, and we are empty-nesters again.
  • Another year above ground – still preferable to the alternative.
2018 Potential Losses (if my disease progression continues, this is what could happen next): 
  • Assistance needed close to 100% of the time for eating and grooming
  • More difficulty operating the computer mouse, wheelchair controls, etc.
  • Eventually, my bladder is going to stop working, and that will suck. This could be the year, but I’ve been saying that for a few years now.
  • Something I can’t even imagine (the devil I don’t know).
2018 Potential Gains: 
  • More writing success at the blog and elsewhere.
  • Find a publisher for my book or decide to self-publish.
  • Caribbean cruise in February, thanks to Kim's home business.
  • Personal care assistants, who began on January 2, 2018, will make Kim’s life much easier.
  • A few positives I can’t even imagine.
I conduct this thorough review only once each year for a couple of reasons. First, it takes that long for me to determine if certain changes are the result of permanent disease progression or are merely the normal ups and downs from aging, seasonal affective disorder, phases of the moon, or a million other variables.

Second, I only do this once a year because it can be a harrowing process. As I contemplate my losses and gains, I tend to extrapolate – envision what my life will be like down the road if the disease progression continues at this rate. I am concerned for my future health and fearful for my future happiness. But, at this moment, Enjoying the Ride is more than just a clever blog name. It’s the truth.
Photo credit at top: my brother Andy took this picture of the ocean cove behind my house, frozen solid, on New Year's Eve 2017.

Tuesday, December 19, 2017

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.

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…

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…