A Great Time to Be Disabled?

I don’t know if there’s ever a great time to be disabled, but there has never been a better time than now. Here are a few reasons:

Home Automation

Lights, door locks, window shades, entertainment systems, security systems, heating and air conditioning—all these items and more can now be automated in your home. Just a few years ago, this was the stuff of science fiction or could only be found in homes of the super-rich. Today, it’s within reach of most folks, at least in small doses. I wrote about my home automation experiences here.

The Big Four: Microsoft, Apple, Google, Amazon

Microsoft Windows is the platform I spend the majority of my time on. Windows has some accessibility features, but it’s mostly third-party programs, like Dragon NaturallySpeaking, that make my computer friendlier for me. Still, Microsoft gets credit for building the platform.

The Apple iPhones and iPads have decent adaptive features. Siri is helpful for a variety of tasks, but falls short of total voice control. Apple is also making a foray into the home automation business.

Amazon makes this list for two reasons. First, they sell so much disability-related equipment on their site at relatively low costs. Whenever I learn that I can benefit from a new gizmo, I start at Amazon.com. Second, the Amazon Echo is an outstanding product, not only for its portal to home automation, but for the many other features it brings to the table.

Google Home is the me-too version of Amazon Echo. Long-term, I expect great things from Google Home, but Echo has a huge head start. Google and Siri are currently fighting it out for best natural language platform. But where Google really shines for disabled people is with their Voice Access app. I have that app on my Pixel phone, and it allows me to control every aspect of the phone with my voice.

Power Wheelchairs

Rule of thumb is that every five years you get a new power wheelchair. A lot happens in the world of power wheelchairs in that period of time. When I looked at the latest chairs last fall, I was blown away. I’m now in possession of a new Permobil F5 VS, which I’ll be writing about more here very soon. DEKA is partnering with Toyota to produce the next generation of iBot, too.

My mother passed away in 2008, and her power chair was an antique compared to my new one.

Mind Control

There's a clinical trial underway by a company called BrainGate. They are developing a neural interface so that patients can control the cursor on a computer monitor or control other assistive devices with their minds.

You can implant electrodes in my brain and have wires coming out of my skull? Sign me up. (I tried to enroll in the study but they're not accepting people with MS.)

In some number of years—I don’t know if it will be two or twenty-five years—I expect that this sort of technology will become available to most paralyzed individuals.

Exoskeletons

Power wheelchairs are nice, but I would prefer to walk. Several organizations are developing motorized exoskeletons that could make this dream possible. I saw a presentation of one of these devices in Boston last year. It seems that it’s easier to develop an exoskeleton if the user can assist with some upper body function. That isn’t stopping a few researchers from trying to develop exoskeletons for quadriplegics too. In fact, one manufacturer is trying to integrate the type of mind control I mentioned above.

Public Access

As the Americans with Disabilities Act matures, more and more public spaces are becoming accessible to people with disabilities. There’s still a lot of work to do, but progress is steady.

Challenges 

•  Funding – all these items cost money, and those of us with some financial resources will fare better than those without. Home automation costs money. A 20% deductible on a $56,000 wheelchair is expensive. I could go on. My point is that we need more public assistance or more insurance company participation for devices that enhance the lives of disabled people. 
• The Downside of Regulation – because the free market can’t provide disabled people with what they need, government must intervene in two ways: funding, as I mentioned in the previous item, and regulation, such as with the ADA. Whenever regulation is introduced, however, clever but unscrupulous people take advantage. For example, in this 60 Minutes story, lawyers are suing small businesses for noncompliance, and pocketing the lawsuit money with no regard to improving accessibility, or even providing their disabled clients with a fair share of the settlements. Whenever regulations are enacted, it takes diligence to keep up with the cheaters.

Bottom Line

There’s never been a better time to be disabled, and I hope to be able to say that every year until I die. I’m not worried about technology—that train has left the station and can't be stopped. I am concerned about access to that technology for the vast majority of disabled people who are not wealthy. This will require diligence on the part of disability advocates, and a mixture of creativity and compassion on the part of government.

Inspirational Videos—Love ’em or Hate ’em?

A dear friend sent me this five minute long inspirational video. Perhaps you saw the story when it came out a couple of years ago. Please give it a watch, then come back and read my comments. For those who don’t have time to watch the video, I have provided a short synopsis below.

Synopsis

Here’s the gist of the story. Adorable and well-spoken girl born with no legs, abandoned as an infant, is adopted by a loving family. Her idol is the gymnast Dominique Moceanu. This legless girl wants to be a tumbler just like her. Amazingly, she becomes a champion gymnast and a professional acrobat. Later, she learns that Dominique is her biological sister, and they are reunited. Moving stuff.

Why I Hate ’em

There is a lot of don’t ever give up and don’t say can’t and you can be anything you want to be sentiment in these videos. I’ve ranted about our society’s love affair with this type of rhetoric (click here). When the result is positive, as in this case, these phrases are accepted as universal truths. For some people, however, the loftiest goal they can imagine is simply getting through another day. A heavy dose of acceptance is sometimes as poignant as a can-do attitude.

Why I Love ’em

How can you not love this story? Other than the cheerleader language, this is good stuff. It nourishes my soul. Seeing people’s hard work rewarded, and watching good things happen to good people, I can’t get enough of it.

Bottom Line

To the extent that these videos are heartwarming, I love them. To the extent that they are motivating or inspirational, I’m good in that department, thanks. Keep putting them up on Facebook. I’ll watch them and I’ll like them and they’ll provide me with little moments of joy. Just don’t project her attitude and her success onto me or anyone else facing challenges. I know that wasn’t my friend’s motivation when he sent me this video. He was touched by it, and hoped I would be too. I was. Thanks for sharing.

What is your opinion on inspirational videos? Love ’em or hate ’em?

Annual Report 2016

Fifteen years is a long time to have MS, especially one day at a time.

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 2016 treat me? Could’ve been better. Could’ve been worse.

2016 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 10% of my bites and sips, now it's 50%.
• After a sixteen-month personal trial with no benefits observed, I gave up on an experimental MS treatment—Biotin. 
• Having some difficulty operating computer mouse and wheelchair controls.

2016 Positives:

• Physical therapy continued to help me maintain the strength and flexibility in my arms and shoulders.
• I made great progress on my book throughout the year. One of these days I'm going to have to call it finished. 
• I voice-automated my home. 
• Just a couple of days ago, I took delivery of a new, modern, power wheelchair. More on that in upcoming posts. 
• DEKA, the iBot people, put my picture on the front page of their website. 
• Down East Magazine printed an excerpt from my memoir.
• Bangor Metro Magazine published a nice interview.
• The Journal Nature mentioned me prominently in an article.
• My daughter got married, and the wedding was beautiful.
• Kim's home business took off.
• Another year above ground – still preferable to the alternative.

2017 Potential Losses (if my disease progression continues, this is what could happen next): 

• More eating and personal grooming struggles.
• More difficulty operating computer mouse and wheelchair controls
• 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).

2017 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.
• New primary progressive MS drug called Ocrelizumab should be approved in 2017, and I will likely try it, although it's another longshot for me.
• 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, or my body’s sympathetic response to the menstrual cycles of the various women in my life (apologies to my dedicated readers for recycling that joke from last year, but I couldn't resist).

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.

An Excerpt from My Upcoming Memoir

In the picture to the right, I'm the little one, Tom is to the left, Andy is in the middle, and of course my mother…

I am still exploring options, so I don't have a publication date yet, but here's a snippet to tide you over. In this excerpt, I'm five years old and I've been told my mother slipped, fell, and will be in a wheelchair for the rest of her life. 

From Chapter 3 of Enjoying the Ride: Following in My Mother's Tracks 

We scurried through the maze of hallways at Eastern Maine Medical Center, an hour’s drive from our house. A few weeks had passed since Mom’s accident, and my brothers and I were visiting her for the first time. Dad coached us as we walked.

“Don’t cry or look scared. It will upset your mother.”

I kept falling behind the three longer-legged Sturgeons.

“She’s going to look different, but don’t stare.”

I slipped farther back until Dad took pity, stopped my brothers, and waited for me.

“Does everyone understand what I’ve just said?” he asked, looking from boy to boy.

I peeked at my brothers. Yes. The answer was yes. Three heads bobbed up and down.

Dad took us into the room, one at a time. I went last. Everything shone bright white or shiny steel. The room smelled like our kitchen after Mom had mopped the floor, but with the faint odor of pee. The collection of high-tech equipment reminded me of TV shows about space ships. A person lay in the middle of it all, hands folded on belly.

Something wasn't right. Dad had said we would be visiting Mom, but I didn’t see her anywhere.  She had long, beautiful black hair. This person’s head had been shaved, and two shiny steel rods were bolted to the top of the skull. Besides, Mom would be in a wheelchair. Andy had said so.

As if sneaking up on a frog in our backyard, I inched closer.

   The eyes… the nose… her mouth. These are familiar. It’s a woman.

   She wore bright red lipstick—a flowering rosebush in a snowstorm. When those lips broke into the smile I had enjoyed nearly every day of my life, I recognized my mother. 

   She couldn’t turn to look at me. The rods kept her head aimed straight up at the ceiling. “Come here, Mitchy. I won’t bite. How do you like kindergarten?” Mom spoke in her usual, cheerful way. Her eyes soothed; her voice comforted.

Dad must have told her not to cry, too.

Standing Up to MS

The rule of thumb is that full-time users get a new wheelchair every five years. Let me do some quick math…holy shit, it's time!

Think about your level of excitement when you buy a new car, then multiply that by a factor of 100. Now you have some idea how I feel about getting a new, top-of-the-line, power wheelchair.

Here's the chair my insurance company just approved:

It's the Permobil F5 VS, and yes, it is a standing wheelchair. Standing provides not only a functional benefit, but a therapeutic one. The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) lists these advantages of a standing chair:

• Improve functional reach and access to enable participation in Activities of Daily Living (ADLs) (e.g. grooming/hygiene, cooking, toileting, reaching medication)
• Improve mobility and lower limb function in those with preserved muscle strength in lower limbs
• Improve range of motion and reduce the risk of contractures
• Promote vital organ capacity including pulmonary, bowel and bladder function
• Promote bone health
• Improve circulation
• Reduce abnormal muscle tone and spasticity
• Reduce the occurrence of pressure ulcers
• Reduce the occurrence of skeletal deformities
• Provide numerous psychosocial and quality of life benefits

These are not insignificant benefits. In addition to the standing function, I'll get full recline to a sleeping position, and a 14 inch rise so that I can sit at high-top tables and reach the top shelves at home. In this case, size matters (I only have 8 inches rise now). There are too many other features for me to list here. In the wheelchair world, technology leaps forward over any five-year period.

This doesn't mean I've given up on the next generation of iBot wheelchair. I'm still very interested in where that product goes, but I don't have enough information to wait at this point. Speaking of the iBot, though, if you go to the front page of the new DEKA website, you might see a guy you know modeling his iBot.

I have so many people to thank for helping me secure this new wheelchair. I'll do that in a future blog post. If all goes well, I should get my Permobil by Christmas or soon afterward. What a present!

I'm Interviewed for the Journal Nature

Here is a link to the article on primary progressive MS, where I am mentioned in the opening and closing paragraphs. I'm pleased that the author doesn't sugarcoat the outlook for people like me.

Here is a link to the larger MS supplement, which includes six other articles —a must read for anyone affected by MS.

Neighborhood Watch

 

As a full-time wheelchair user, and someone who no longer works, I spend the better part of each day indoors, by myself. It’s not so bad, however, because I live in a glass house.

Two sides of my living room are nothing but windows—an observatory of sorts. When my eyes are not glued to my computer screen writing, reading, corresponding, researching, or watching Netflix, I’m gazing out my windows, and I love what I see.

Wildlife

A couple of days ago, a flock of small, genetically identical, dark brown birds with white spots descended upon my lawn. Probably 200 of them. I suppose half were male and the other half female, but they all looked the same to me (is that racism, sexism, speciesism?). I didn’t recognize their classification, and I couldn’t find it on the internet. They moved about independently, randomly, at a frantic pace, feeding on invisible morsels between my blades of grass. Everything in their world occurred at hyper-speeds, a blur to our human senses.

Each time one bird violated the personal space of another, a brief confrontation ensued. Wings flapped, and some unknowable set of rules determined the winner. The victor held his ground while the vanquished was excommunicated to another part of the lawn.

Every so often, however, some outside force, something they saw or something they heard, caused every member of the flock to abandon their self-interests. They stopped feeding and squabbling, oriented themselves all in the same direction, and took flight like mindless cogs in a larger machine. They so loved the morsels in my grass, however, that after a few minutes they flittering back and once again filled the space with a buzz of random, independent activity, until the next common danger united them in flight. 

There are few analogues for this behavior in the human world. Once people start acting independently, we are loath to come together for the common good without first engaging in considerable debate, arm-twisting, and deal making. Yet here we sit at the top of the food chain…for now.

But I digress.

People Watching

Sitting in my wheelchair, peering out my windows, I’m also treated to some top-notch people watching. My neighbors Sue, Susan, and Kri walk their dogs (Jake, Rocko, and Sadie) several times a day. It’s not only dog walkers, though. All sorts of people wander down our street. Sometimes I recognize them from the larger neighborhood. Most of the time I don’t. They come in all sizes and shapes: young and pretty, old and weathered, athletic, disabled, and everything in between. Why this parade by my window? There’s an attraction at the end of my street—the Atlantic Ocean.

Scenery

Animals and people are fascinating, but unreliable. The scenery outside my house—it never disappoints. The six-foot-tall window immediately to the right of my computer screen may as well be a work of art, a painting. The lower two feet of this masterpiece depicts my front yard, the street, and my neighbor’s front yard. This is where the strange flock of birds did their thing. This is where my neighbors walk their dogs and take their constitutionals. This is where the snow piles up.

If I raise my head just slightly, I take in the next foot or so of this artwork—the ocean at the end of my street. Our corner of the Atlantic is a shallow cove, so much so that at low tide it empties and becomes a mud flat, which has a certain appeal, but it’s not as visually pleasing as the cove at high tide. Something about a basin full of water, it calls to me. When I know visitors are coming to my house, I hope for a higher than average tide. I’m pleased with the result about half the time.

Still higher in the portrait, the next foot captures the opposite shore of the cove. A well-maintained walking/biking path runs along that piece of coastline. As I watch folks make their way along this Greenbelt, I am quite certain that nobody is using it because they must, but rather because they choose to. People follow this path for the journey itself, not because they need to be anywhere in particular along its route.

And finally, the upper two feet of my window painting is filled with sky. It’s almost never the same day-to-day or minute-to-minute. I face east, so I’m treated to sunrises and often moon rises. Even though the sun sets on the opposite side of my property, it blankets my view with a soothing glow on most evenings.

So yes, I am stuck in the house, especially in the winter, but I have plenty to watch in my neighborhood, and for this I am grateful. Everyone should be so lucky.

Have I Betrayed My Childhood Self?

I can still remember the questions I pondered as a child:

• What will my job be when I grow up?
• Who will I marry? (Will she be hot?)
• Where will I live?
• How many kids will I have?
• Will I grow old?  How old?

I also recall some of the promises I made to myself as a child:

• I will become rich.
• I will become famous.
• Nobody will ever tell me what to do.

I didn’t keep any of those promises.

Until I left the rat race a few years ago, I sometimes felt guilty about coming up short. Today I understand that I am not beholden to my childhood self. These dreams served a developmental purpose (in order to become an adult, one must first envision it), but I shouldn't have considered them a blueprint for life. Our childhood ambitions are misguided because young people cannot grasp life’s complexities, and don’t appreciate its subtleties. The degree of wisdom necessary to do so is acquired later in life, if ever.

In retrospect, these are the questions I should have pondered as a child:

• Will I be lucky enough to find real love? (I was)
• Will I have my health? (I did for the first 38 years)
• Will I lead a happy and contented life? (I have)
• Will I have a fulfilling career? (not really, but it paid the bills)
• Will I be a good person? (with some exceptions, I think I have been)

And these are the promises I should have made to myself when I was a kid:

• I will not presume that life owes me anything; any positive experiences beyond being born are simply frosting on the cake.
• I will be a lifelong learner, a rational and open-minded thinker, and a candid, yet polite, communicator.
• I will not waste precious resources on jealousy, hatred, or revenge.
• I will try to do my small part to improve the human condition.
• I will not blindly adhere to hollow societal norms.   
• I will live each day as if it will be my last.
• I will be true to my family and friends.
• I will be reliable and humble.
• I will have fun, lots of it.  
• Even when life becomes difficult, I will endeavor to persevere.

If I had made these promises to myself as a child, could I have kept them? Let’s just say that at 53 years of age, I’m still a work in progress.

If young Mitch could have peered into the future, I’m quite certain he would have been disappointed with what he saw. But young Mitch wasn’t smart enough to discern what a good life looks like. How could he have? He was just a kid.

Here Is a Link to My Down East Magazine Essay

Click here to read the excerpt from my book.

Bangor Metro Magazine Features Story on Kim and Me

At the risk of over-tooting my own horn, I wanted to share with you another awesome piece of news. Bangor Metro Magazine, which services mid-coast, eastern, and northern Maine, recently contacted Kim and me for an interview. Click here to read the piece.

At one point I recount how 17 years ago my family doctor said I "probably have a good 20 years left." That was a misunderstanding which I explain in some detail in the upcoming book, so don't do the math and think that I only have 3 years left to live!

Many thanks to journalist Joy Hollowell for a wonderful article.

Click here to read.