Some Improvements to This Website

I am very busy these days. It’s as if we are cramming an entire summer’s worth of activities into the first two weeks of July. So I’m putting together a post in about 10 minutes – please forgive me.

I’ve been looking for an opportunity to highlight some improvements at EnjoyingtheRide.com:

Pages

Google’s Blogger, which is the platform that I used to build this blog, has a feature it calls Pages. These show up as a row of headers just below my ocean-view banner at the very top. For now, I have the following Pages; I may add more later:

Inspiration: I’ve been careful not to describe this website as inspirational. The connotation would be, I fear, that it contains only positive posts and happy endings – a fairytale. I prefer to think of my writing as realistic or helpful, like a good engineering report or business plan. But, despite my best efforts, people do find certain posts inspirational, and I have gathered a few of those on this Page.

Videos: I’ve categorized these as “iBot Videos” and “Other Videos.” Enjoy.

Vintage Pics: From my parents’ wedding through Kim and my wedding. 

Travel: I’ve done a lot of traveling as a disabled person, and I’ve blogged about it frequently.

Share Buttons

On the top of the right side of the page you will see five new buttons, one each for sharing content on Facebook, Twitter, Email, or Google Plus, and one button for printing a hard copy of the blog post. I encourage readers to share my posts liberally. I only ask that you don’t distribute content without attributing it to me (attribution is done automatically if you use these buttons). The easiest way for you to manually attribute content is to say something like, “From the website EnjoyingtheRide.com, Mitch had this to say:…”

My goal is to reach as many people as possible through my writing. I am humbled when someone likes a post enough to pass it along. If you have any questions about sharing content, please don’t hesitate to email me.


A Reminder of Some Existing Features

Search: Immediately under the share buttons is the search feature. I’ve written on many topics, and if you put some keywords in about disability, multiple sclerosis, or a zillion other things, there’s a good chance you’ll find some content on the subject. Or, if you remember that you enjoyed a post about snowmobiling, for example, and you’d like to read it again, type the word “snowmobiling” into the search box.

Click Here to Email Me: Under the search box is a button to press if you would like to email me. I love to hear from readers.

Receive Email Updates of New Posts: If you want to be sure not to miss a post, one way is to receive new posts via your email inbox. Type your address in this section, and you will receive a confirmation email. You’ll need to respond to that confirmation email in order to be added to the database. Hundreds of people stay in touch with EnjoyingtheRide.com in this way.

Please let me know if you’re having any technical problems with the website, or if you have any suggestions for improving this blog.

Finally, please feel free to share my web address, www.enjoyingtheride.com, with anyone you feel may enjoy the site.

Thanks so much for reading and staying in touch. For my American friends – have a wonderful Independence Day on Friday. I plan to.

My Do’s and Don’ts

I don't walk in the woods anymore, but I do sit by the ocean.
I don't sleep well at night, but I do take naps during the day.
I don't travel much, but people visit me often.
I don't work, but I remain relevant.
I don't walk, run, swim, or bike, but I still breathe, swallow, see, and speak.
I don't drive, but I am driven.

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I am dependent but not helpless.
I am disabled, but I'm not hungry, wet, cold, or abused.
I have many friends, but there is much I can't do with them.
I am left behind, but I enjoy my time alone.
I am fragile but not weak.
I am embarrassed but not ashamed.

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I am a born optimist, but I don’t like my chances.
I am a prisoner in this body, but I possess free will.
I am embattled, but I remain content.
I am frightened, but I am loved.
I am frustrated and discouraged, but more often I am amused and intrigued.
I worry about the future, but I live in the present.

My New Sure Hands Overhead Lift System

My April 29 post said:

“The Sure Hands lift system has the unique characteristic of allowing a disabled person to control the entire process. If I had one of these, I could transfer from bed to Invacare wheelchair to shower chair to iBot wheelchair to toilet, or any combination thereof –all by myself. How cool would that be?”

Well, it’s installed, and I’ve been using it for a few weeks, and it is very cool indeed.

As you can see from the photos, there are two “hands” that grab me around my chest just under my armpits, and there are two hooks that go around my thighs. I have a remote control hanging around my neck with buttons for up, down, travel right, and travel left. I wouldn’t characterize the lift as “comfortable.” It’s more like “acceptable.” I wouldn’t want to be suspended in this way for more than a minute or two, and luckily I don’t have to be.

I’m able to transfer from my wheelchair to my bed or to the toilet. If we put a second wheelchair or a shower chair anywhere under the overhead rail system, I can transfer to that as well.

Kim likes to sleep later than me on weekends. For the past couple of years I’ve been unable to get out of bed without her assistance. I can now. Granted, the activity wakes her up, but she has been able to fall back asleep once I finish my transfer.

Until the system was in place, we were doing some rather unorthodox transfers, which carried a certain amount of risk for Kim as well as me. Those days are behind us, at least at home.

My insurance company indicated they will reimburse all but $700 of the $12,000 product cost. I haven’t seen that check yet, and I won’t believe it until I do.

Independence – it’s a wonderful thing.

Driverless Cars – Yes Please

I enjoy the thought exercise where I imagine how people 100 years in the future will regard our generation. I hope that they will be horrified by what MS patients had to endure, because the disease will have been eradicated for many years by then. I also hope they will be appalled by our mindless partisan bickering, because 100 years in the future government will be characterized by reasoned debate and rational discourse. And finally, I’m sure that our descendents will be amazed that human beings used to drive automobiles on public roads, because all personal vehicles will be self-driving by then.

What are the potential benefits of driverless cars? There are so many. Here are just a few:

1. Once the technology is in place, human fatalities from automobile accidents will become rare – maybe on par with the number of deaths from drowning. Today, automobile accidents are the number one cause of death for young people. Almost all of these fatalities are due to human error, not machine error. Self-driving cars will monitor each other and road conditions much more accurately than humans do, and they will make quicker and better driving decisions. Once in a while mechanical/computer failure or unexpected road conditions may still result in accidents, but they will be uncommon.

2. When all vehicles are communicating with nearby vehicles and with a traffic monitoring/control system, traffic jams will become much less common. Overloaded roadways will still exist, but with traffic control systems routing individual automobiles in the optimum direction, the situation will be greatly improved. Commutes will be shortened, and workers will be productive or will be free to relax during their commutes.

3. Fuel efficiency will increase as automobiles operate closer to optimum speeds, with much less stop and go driving, while avoiding excess idle times due to fewer traffic jams. Also, with increased operating efficiency will come decreased pollution loading.

4. Personal automobile ownership will drop significantly as a fleet of self-driving cars will be available on short notice, at least in urban areas. This will lower everyone’s cost of transportation.

5. And my personal favorite – people can be transported independently in an automobile even if they are not capable of driving. This will help disabled people, minors, injured people, and even intoxicated people (who are responsible for 1/3 of auto accidents).

The technology is evolving quickly. Google has a fleet of self-driving cars, and has recently developed a prototype of the next generation autonomous car that doesn’t have a steering wheel or gas and brake pedals. The biggest challenges, however, may not be technological, but logistical and legal. How will traffic laws need to change to accommodate a slow evolution from human driven to self-driven automobiles? How will we handle liability in accidents, especially if there are injuries? Who do you sue if the accident is due to an onboard computer failure – the owner, the passenger, the auto manufacturer, the software developer? Also, how can we prevent hacking and protect privacy on the roads?

I can sort of imagine what the roads will look when all cars are self-driven. But I have trouble imagining what the roads will look like for the twenty or so years when there is a transition from 100% human-driven to 100% self-driven cars. People who invest in the self-driven cars will be angry with human drivers who make mistakes that cause traffic jams or accidents. Human drivers will be annoyed by self-driven cars that go too slow or come to silly full stops at abandoned intersections at 2 AM. As laws and economics slowly push human-driven cars off the road, there will be backlash from traditionalists.

“We love our cars, so why should we have to give up the joy of driving? This is America after all.”

Some answers are in my list of advantages – especially the one that states:

“Automobile accidents are the number one cause of death for young people. Almost all of these fatalities are due to human error, not machine error.”

Is this not reason enough?

I think there will always be a place for enthusiasts to drive their own cars, but eventually it will be relegated to specially designated sections of road. I envision that human driving will become a purely recreational activity.

I can’t wait for the day when I can travel independently again in my self-driving wheelchair van. Okay, I may not live that long, but today’s young, disabled people almost certainly will.

Here are two links of interest:

http://www.bbc.com/future/story/20130405-radical-roads-drive-robot-cars

http://www.usatoday.com/story/money/cars/2014/01/02/self-driving-study/4292893/

And two TED talks below (or click here and here):

Amazon Smile

Aren't you sick of people asking, cajoling, even beseeching you (it’s better than besmirching you) to donate to their charity? I’m not going to do that today. Amazon.com, the online bookseller turned video streaming company turned PROVIDER OF ALL THINGS, is willing to donate for you.

The program is called Amazon Smile. You tell Amazon where you want your money to go, and they will donate 0.5% of all your qualifying purchases to that charity. Allow me to clarify. They are not charging you an extra 0.5% and then donating it. They’re taking 0.5% off their profits from your purchase and giving it to the charity you designate. Why in the world would you not take that deal?

Mitch, how do I take that deal?

I’m glad you asked.

1. Turn on your computer, tablet, or cell phone. If you can’t find the ON button, ask a small child.

2. Go to your internet browser and type in the following website name: smile.amazon.com

3. Enter your email address and Amazon password. If you can’t remember those items then ask the NSA. They have it on file, for your convenience.

4. Select a charity. I might suggest organizations that have the words “multiple sclerosis” in their name.

5. Instead of shopping from Amazon.com in the future, shop from smile.Amazon.com, and donations will be made automatically to your designated charity.

0.5% of your annual purchases may not seem like a significant amount of money, but 0.5% of Amazon.com’s sales for a year is a hugely significant amount of money. Whether or not you are a fan of Amazon.com, they are trying to do a good thing here. Let's hold them to it.

Tell them Mitch sent you, and you’ll qualify for a free lifetime subscription to my new blog entitled “How the Fuck Did I End Up On This Ride Anyway?”

Two Important MS Videos

My friend Kate Milliken is a talented and tireless advocate for people with MS. Here is her message:

My name is Kate Milliken and I have spent the past year building an online platform called MyCounterpane.com which allows people to tell their stories via their emotional ups and downs. Because I live with MS, this has been my first market, and I have decided that all of us need to be celebrated to give people who don't know about MS a look into who we are, what we know, and how we feel. I made a video about some of our original MCP members to send to the Ellen Degeneres show. Their stories are individual, yet the attention on them represents all of us, and that’s why I am hell bent to Get MS on Ellen (#MSonEllen). 

I am an active participant at MyCounterpane.com. I recommend all people with MS consider contributing there. But Kate's message today is about her video to Ellen Degeneres, below (or click here).

The second video I want to share with you was produced by a UK based MS group called Shift.ms. The short piece is called "Circle of Truth," and humorously depicts a young woman deciding whether or not to disclose her MS at work. See below (or click here).

Bionics

There are many approaches to solving disability problems in human beings. In the case of multiple sclerosis, for example, here are just a few of the strategies currently being employed:

• Many researchers are pursuing pharmacological solutions such as disease modifying treatments focused on the body’s immune response.
• Some researchers are considering drugs that will have neuroprotective qualities, shielding the patient’s central nervous system from attack.
• Others are focusing on developing stem cell treatments that will either rebuild the immune system or repair damage done to the central nervous system of patients with multiple sclerosis.
• Still others are concentrating their efforts on identifying the root cause of the disease, presuming that this knowledge can facilitate a cure.

But this blog post focuses on those who are pursuing the design and manufacture of electromechanical aids for disabled people – bionics. The EKSO exoskeleton  is getting closer to commercial readiness every day. In the world of prosthetic limbs, DEKA Research and Development, who developed my iBot mobility system, recently received FDA approval for their Luke Arm. I was privileged to see the arm and discuss it with the manager of engineering during our visit to the DEKA facility late last year.

I urge you to watch the YouTube video below. It's a TED talk delivered by Hugh Herr, a double amputee and developer of bionic systems at MIT. He is the personification of “physician, heal thyself.”

Herr looks at disability in a novel way.

“Basic levels of physiological function should be a part of our human rights. Every person should have the right to live life without disability if they so choose -- the right to live life without severe depression; the right to see a loved one in the case of seeing impaired; or the right to walk or to dance, in the case of limb paralysis or limb amputation. As a society, we can achieve these human rights if we accept the proposition that humans are not disabled. A person can never be broken. Our built environment, our technologies, are broken and disabled. We the people need not accept our limitations, but can transcend disability through technological innovation. Indeed, through fundamental advances in bionics in this century, we will set the technological foundation for an enhanced human experience, and we will end disability.”

Whether you are a healthy or disabled person you’ll enjoy this entire 19 minute video. But if you just want to hit the emotional highlights, watch the story of a woman who receives new bionic legs at the 12:10 point of the video. Then watch the concluding story of a woman who lost her leg in the Boston Marathon bombing, beginning at 14:50. Bring a box of tissues.

If you are reading this in an email, click here to access the video.

Still a Gym Rat

(Wikipedia)

Before I was diagnosed with MS, and for the first few years afterward, I was dedicated to my exercise programs. My ideal workout time was early morning, because all I had to do was wake up, get my feet on the floor, and lean forward. The next thing I knew I was at the gym.

After my MS diagnosis, I continued to visit the gym on a regular basis. Eventually, when my legs became too weak, I had to give up on the aerobic exercise and the lower body weight lifting. But I still maintained my upper body workouts – even when I started using a cane, two forearm crutches, and then a scooter. Finally, it became too much, and I stopped going to the gym in 2006.

Fast-forward to 2013. My neurologist told me about a facility in South Portland called the Medically Oriented Gym, or MOG. Saco Bay Physical Therapy works one-on-one with patients like me at the MOG. In September, I had my first appointment with Gabe, a physical therapist. We talked about goals. I wanted to maintain or improve the range of motion and strength in my upper extremities. Also, I would welcome anything they could do for leg strength and flexibility, but I knew that would be a more difficult task.

Gabe measured my strength and range of motion to establish a baseline. He then worked with his associate, Jodi, to develop a program for me. Over the past nine months Jodi has incorporated a variety of stretching routines and exercises to strengthen specific muscles and maintain or improve my flexibility. Gabe has evaluated my progress on a regular basis. I have at least maintained and even improved in some of his measures. It’s a beautiful thing.

Gabe, Jodi, and the rest of the team are consummate professionals. Not only do they understand the mobility issues I’m facing, but they exhibit sincere empathy. They know when to push me hard and when to back off. They constantly come up with creative new ways to challenge my muscles to do anything and everything they are still able to do. 

I generally have two one-hour sessions per week, and I plan to keep this up indefinitely. In my case, insurance is picking up 100% of the costs.

The benefits I experience from my workouts at the MOG are more than physical. There is an emotional component as well. I always feel more positive about my life when I am fighting back against this creeping paralysis. And even in the days before I became disabled, I experienced a boost from my gym workouts if for no other reason than I was getting out of the house and moving around. That still applies.

This physical therapy program isn’t going to overcome the relentless attack that MS is waging on my central nervous system. My overall physical well-being is continuing to deteriorate, and I don’t expect it to stop. But the work I am doing at the MOG allows me to maintain as much strength and flexibility as I possibly can, for as long as I possibly can. I encourage everyone with MS or other similar conditions to “use it or lose it.” If you live in the greater Portland area, I recommend Saco Bay Physical Therapy and the MOG. If you live elsewhere, find a physical therapist and a gym that you can work with.

If you're a healthy person, and you're not getting regular exercise, are you just trying to piss me off? You enjoy such good fortune, yet you do nothing to nurture and protect it. Don't make me come over there and kick you in the ass, because I will.

One of the exercises Jodi has me do is to lie on my back (which is no small feat) and execute bench presses. Before MS, I could do three sets of ten with a substantial weight on the bar. I would grunt and strain and put everything I had into each repetition. When working with free weights, I always had a spotter, because if the weight were to land on my chest or neck it could have been dangerous. But today I am bench pressing a broomstick, and I still grunt and strain and put everything I have into each repetition. Last week I said to Jodi, “You better stay here and spot me, because if I get pinned by this broomstick I’m not sure I’ll be able to breathe.”

We laughed and laughed. I’m a funny guy.

Published Another Column in MS Focus Magazine

In a November, 2013 post I shared how MS Focus magazine had asked me to write a piece for their recurring feature entitled "Men… & MS." I wrote "Focused on Living," where I described how having MS has given me, whether I like it or not, new focus. Apparently it was well received, because they asked me to write again.

This new column is entitled "War and Peace on the MS Front." It makes the case that the best approach is to fight MS on some days but make peace with it on other days. To read the article, click here and work your way to page 60.

Enjoy.

The Card Holder

As the second Sunday of May approaches each year, I naturally grow sentimental about my late mother. But there are other triggers that make me pause and reminisce about her too.

In 1969 when Mom became a quadriplegic, clever friends and relatives devised several homemade aids for her. There was a cup holder for her wheelchair, poles with hooks or other attachments on the end to help her reach things, and a wooden card holder. She loved to play cards.

The image to the right is the earliest picture I have of Mom using her card holder (click on any picture to enlarge it). She was a Bridge player, and a pretty good one. Later, she used the card holder for games like UNO with her grandchildren. Mom used the holder so often over the years that it became worn and smooth, but it held up well.

A couple of months before Mom died in 2008, and seven years after my diagnosis, I first noticed my MS symptoms spreading from my lower to my upper extremities. I was shuffling a deck of cards during a poker game with Kim and her parents, when my hands started to feel fuzzy.

In the days after my mother’s passing, we solemnly went through her belongings. Kim came across her card holder and held it up for me in a questioning manner. I said, “Sure, let’s take that. You never know…”

As I looked it over I noticed the name “Vernice Sturgeon” etched onto the front of the cardholder, just in case anyone wondered who it belonged to. This was my childhood handwriting. I remembered personalizing the card holder for Mom when she first got it.

We took the card holder home, and it sat in the attic for a few years. During that time my hand function slowly deteriorated, but I could still hold on to cards. Then, about two years ago I began having more difficulties. I asked Kim to dig out Mom’s card holder. I assumed that something as ancient and simple as this well-worn device wouldn’t be sufficient for my needs. I was wrong.
 
We tried a couple of store-bought models, but they were inferior to Mom’s. Today, I use hers exclusively.

If I was a religious man, I might say that when I’m playing cards Mom is looking down on me with a big smile on her face. There are two problems with that. First, I’m not a religious man. Second, even if I was, she obviously isn’t watching over my card playing because I don’t win any more often than I did before I started using her card holder.

As the years go by, and my physical condition becomes almost indistinguishable from my mother’s, I wish more and more that she was still here to show me the way. That’s no longer possible, but I will hold dear my photos and my fond memories of Mom. I’ll also treasure the lessons I learned from her about living a contented life as a disabled person. These lessons were imparted to me by example, not by talking.

And I will also cherish this little homemade card holder that brought her such joy for thirty-eight years.

Happy Mother’s Day to all the Moms out there.


Below is our Mother’s Day picture from 1972, two and a half years after her accident. Left to right: Andy and Tarr, Ted, Vernice, Mitch, Tom. Notice her homemade cup holder under my right hand.