Wednesday, January 27, 2016

Why People in Wheelchairs Shouldn’t Watch the News

Tuned in to the local news this morning. I don’t want to hear about fatal car accidents, shootings, or the latest offensive statement to come out of our governor’s mouth. I’m lying. I can’t get enough of the gems that come out of our governor’s mouth, but that’s for another blog post. This time of year Kim and I like to know the weather forecast. Plus, I usually I get some news that I either enjoy, or that informs me, or both.

How did watching the local news work out for me this morning? Not so well.

Before the weather segment, I half listened to report of a fatal fire at a mobile home in some far away town. Frankly, I had no interest until I heard them say that the victim was, “confined to a wheelchair.” All of a sudden, the story had meaning for me. All of a sudden, I imagined myself going up in flames and not being able to get out of the house – happy thoughts on a Tuesday morning.

After the weather report, which was unusually mild for January by the way, the health segment addressed the evils of a sedentary lifestyle. The owner of the physical therapy clinic I visit twice a week made one of her occasional guest appearances. Today, she advised people who have office jobs to get up off their butts and move around throughout the day. She gave dire warnings about what can happen to those who sit too long. These included: obesity, musculoskeletal pain (here, she went into some detail), type II diabetes, cancer, heart disease, and depression. The morning news host summarized by saying, “There’s nothing good about sitting too long.”

I hate these well-intentioned stories. But, I would have to go off the grid to avoid them, and I'm not about to do that.

So, what did I learn this morning? First, people in wheelchairs should have well-developed fire prevention and escape plans. I don’t. Fires can spread quickly, and I can think of few worse ways to die. Second, upon further reflection, I can do more than what I’m doing to avoid the ravages of my sedentary life. Other than physical therapy twice a week, I can do little things every day, on my own. This was a wake-up call.

So, the question remains, will I make these changes, or will I simply conclude that people in wheelchairs shouldn’t watch the news? Vegas is giving even odds.

Wednesday, January 20, 2016

My Mother’s Patient Lift

After my mother passed away in 2008, we began the joyless task of going through her things. We donated her hospital bed and considered doing the same with her patient lift, a tool her caregivers had used to get her in and out of bed for the last thirty-nine years of her life (like Lassie, several dogs played this role over the years). Kim and I decided to claim the lift in case we might need it someday. The contraption proved useful in my house only once when I fell on the floor and couldn’t get up.

This model shared certain characteristics with an army tank: big, heavy, and awkward to maneuver. But we held onto it anyway. A couple of years later, we installed an overhead lift system in our bedroom, which rendered this device even less necessary. Because there are almost no overhead lifts in hotel rooms, we recently purchased a more modern, much lighter lift for traveling. With my mother’s lift relegated to third string, we decided it was time to divest ourselves of it. We knew if we asked only $50 on Craigslist, a token amount, it would go quickly, and some disabled person would get a great deal.

Gary contacted me last weekend and said he would drive from Massachusetts on Wednesday to pick it up. Perfect. The doorbell rang at 10 o’clock this morning, and I met a pleasant, friendly gentleman. He patted Phoebe and complemented my house and my neighborhood. I lead Gary into the garage to show him the lift. “Just what I was looking for,” he said. “I’ll take it. I didn’t drive two hours to go home empty-handed.”

“Excellent. Who will you be lifting with it?”

“Oh, I don’t want it for that. I own a print shop and have to handle 300 pound boxes all the time, and it’s going to kill me. I’ve been looking for one of these at a reasonable price.”

Wait a minute. I assumed I would be selling this to a disabled person. That’s why I priced it so low. Should I tell him he can’t have it? On the other hand, he’s a very nice man, and he did drive two hours… “I hope it works out well for you,” I said.

Gary patted Phoebe again, gave me the $50, noticed my Apple watch and showed me his. Within minutes of arriving, he packed up the lift and set out for Massachusetts. Oh well, not ideal, but that’s done.

Then, a sinking feeling came over me. I didn’t just sell my patient lift to somebody who doesn’t have a patient. I sold my dear mother’s lift to be used in some dirty old print shop. It shouldn’t matter. She’s no longer alive, and the lift never was. I still felt awful, though. A trace of my mother resided in that hunk of metal, but I knew the lift was impractical to keep around as a memento. Plus, I have something better to remember her by.

I still use her cardholder all the time. If the day comes when my hands don’t allow me to play cards, even with the assistance of this tool, I’m not going to sell it on Craigslist. I'm going to keep it forever, just like the memories of my mother.

Tuesday, January 12, 2016


Once a month, at physical therapy, I have to answer a questionnaire about how well I can complete certain tasks of daily living. It’s an insurance requirement. The scale goes from 0 to 4, where 0 is extreme difficulty or unable to perform, and 4 is no difficulty. I score mostly 0 or 1, except sleeping. I’m a 4 at sleeping.

But the next time I answer the questionnaire, I’m going to score another 4 – vacuuming. All of a sudden, as of about a week ago, I can vacuum the entire house, all day long if I so desire. A miracle cure for MS? Not so much. The maid from the Brady Bunch stops by every day? Not exactly. We bought a robotic vacuum cleaner, a Roomba 980.

But, in honor of everyone's favorite maid, we've named her Alice.

posted a couple of months ago about how Kim and I needed help around the house. I’m still working on getting a home care worker, but in the meantime, we eliminated one of Kim’s more time-consuming household chores. Not only that, but now I run the vacuum several times per week instead of Kim running it once on the weekend, and we have nice clean floors all the time. Not only that, but this robot is damn entertaining. I watch how she maneuvers around the house, blind as a bat, and doesn’t miss a spot. What fun it must’ve been to be a software developer on this project.

I control Alice from an app on my iPhone or iPad Mini. Unfortunately, I can't operate her from my Amazon Echo or my Apple Watch – not yet, anyway.

Now, if only we could find an affordable robot to get me up, showered, and dressed each morning, we would be in business. How many years until that happens? I’m thinking twenty, plus or minus. What do you think?

Tuesday, January 5, 2016

Annual Report 2015

It’s that time again, when I take a moment to assess 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.

My MS journey should not be considered typical. With MS, there is no typical. Everyone’s experience is unique. But, because you read this blog, you’re intimately familiar with at least one person’s narrative.

So, how did 2015 treat me? Could’ve been better. Could’ve been worse.

2015 Negatives:

Because of growing weakness in my hands, I continue to have more difficulty getting food and drink into my mouth – feeding myself. This begs the question, why are our mouths so high up in our bodies? If mouths were where they should be, just above the navel, I would have no trouble consuming food and drink. Furthermore, I’m sure a one-inch-long esophagus would be much easier to manage than the monstrosity of any esophagus we are burdened with. This argument pretty much puts the nail in the coffin of intelligent design.

2015 Positives:
  • Physical therapy continued to help me maintain my strength and flexibility in my arms and shoulders.
  • Occupational therapy continued to help with my activities of daily living.
  • I announced that I’m writing a book, and I’ve made great progress throughout the year. I will update you in more detail in a separate blog post.
  • Started on a new MS treatment in April of 2015 – Biotin. Will evaluate in April 2016, but it ain’t knocking my socks off.
  • I bought an Apple Watch and an Amazon Echo.
  • We went camping for the first time since 2008.
  • Hosted a wedding in the backyard.
  • Son, Zachary, graduated from college.
  • Another year above ground – still preferable to the alternative.
2016 Potential Losses (if my disease progression continues, this is what could happen next): 
  • More eating and personal grooming struggles.
  • More difficulty operating a mouse.
  • 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).
2016 Potential Gains: 
  • More writing success at the blog and elsewhere.
  • Find a publisher for my book or decide to self-publish.
  • My daughter, Amy’s, wedding in August.
  • 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.

Just as importantly, 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 to this moment, Enjoying the Ride is more than just a clever blog name. It’s the truth.