Sleeping in My Wheelchair

Some years we’ve gone on exotic vacations during Kim’s February break. This year we decided to simply spend a couple of nights at a casino resort about three hours away – Foxwoods.

We had stayed there several times over the years and knew that the wheelchair accessible rooms were better than average. But we hadn’t been there with our new portable lift which helps transfer me from wheelchair to bed, and back. I had a concern that the legs on the lift might not fit under the bed. It requires about five inches of clearance.

As soon as we arrived in the room, we tried it out. Indeed, the base of the bed essentially sat on the floor. I phoned the maintenance department and asked them to send a technician to our room with some wooden blocks to raise the bed by several inches. They said they would.

We didn’t want to wait in our room for who knows how long, so we left a note on the door that essentially read, “there is a note on the bed.” We left a note on the bed that essentially read, “see that lift over there? It needs to be able to get under the bed. Call us at (I gave my cell phone number) if you have any questions.”

We went downstairs and gambled and had dinner and a drink and then went back up to the room, probably four hours later. Nobody had been there yet. I called maintenance again, reiterated my needs, and complained about their lack of response. Within a few minutes the nighttime housekeeping manager showed up.

I suggested she scour the maintenance shop for scrap lumber that we could put under each corner of the bed. She returned about 10 minutes later, not with lumber, but with eight reams of printer paper. Close enough. She placed two reams under each of the four corners of the bed. The lift slid underneath with ease. Nice work by everyone, except the guy who was supposed to come four hours earlier, whoever he was. Going forward, we’ll bring a set of bed risers with us when we travel.

But the problems were just beginning.

Later that evening, Kim used the portable lift to transfer me from my wheelchair to the bed. She got me well situated, things were looking up. But when I lay in bed, that’s the position I’m stuck in for the entire night. I can’t move around like most people. So, if a mattress isn’t comfortable, I can’t relax, and that was the case with this one.

After a sleepless night, at 5:30 in the morning I woke Kim and said, “I can’t stand it anymore. You’ll have to get me up and put me in my wheelchair. Either I’ll work on the computer or maybe I can nap.”

Kim got up, transferred me, put a blanket on top of me and a pillow behind my head. My Invacare wheelchair reclines almost all the way, and I can raise my feet. Soon, I found myself in such a comfortable position that I slept – for five hours! I didn’t know that was possible.

At 5:30 that morning, Kim and I were resigned to cutting our vacation short and going home that day. But after my comfortable sleep in the wheelchair, we decided to skip the bed altogether on the second night. It worked. I still prefer to sleep in a bed, but I now have more options when we travel, and options are good.

I can sleep in my wheelchair.

Does This Blog Post Make Me Look Fat?

Yeah, it should, because I am fat. No two ways about it.

I have lots of excuses, though. First, genetics. If you lined up my two brothers and me, and a cardboard cutout of our deceased father, the familial profile could not be denied. Second, I’m a couple of years beyond the half-century mark, and my metabolism is slowing down. Third, I live in a neighborhood with unlimited dining opportunities, and I am weak, weak, weak. So very weak.

However, the primary reason I’m fat is because I am not only unable to exercise enough to burn any meaningful amount of calories. Worse, I don’t even burn those base calories that healthy people do just by being themselves all day – by walking around, climbing stairs, preparing meals, getting dressed, holding a telephone up to their ear, typing. You get the picture.

I’ve tried lots of diets over the years. Probably the most effective has been Weight Watchers. I’ve done that two or three times, and I’m sick of it. I needed something new to motivate me. Enter, Jenny Craig. You heard me, freaking Jenny Craig.

The Jenny Craig model is similar to Weight Watchers, in that you eat small portions, frequently throughout the day. You can enjoy almost any food you want, as long as it is in moderation. But the big difference with Jenny Craig is that you don’t count your points or your calories or any other characteristic of the food. You just buy all of your food from Jenny, and it comes in nutritionally balanced, appropriately sized portions. Radical? A little.

I can’t purchase my food from Jenny for the rest of my life. And they know this. Once I get close to my target weight, they promise to help me transition back to the real world and keep the weight off. That's the real challenge.

How’s it taste, you ask? For microwave food – not bad. In fact, I’ll miss some of it, especially the breakfasts and the triple chocolate cheesecake. It’s fairly expensive. I spend about $150 a week on my food. But this cost is significantly deferred, if not completely offset, by how infrequently I now eat out.

How’s the weight loss going? Slow but steady. I’m losing about a pound a week, and I’m currently down 17 pounds. My goal is to lose 30, so I just crossed the halfway mark. Wondering how I go about weighing myself? Once a month I drive my wheelchair onto a wheelchair scale located at a medical office in Portland. I know the weight of my chair, so I just do the math each time.

I wish I could report that this weight loss has been a life-changing experience, but it hasn’t, not yet. I can see the difference in my face. My clothes don’t fit noticeably looser, however, and I can’t say that I “feel better.” But I know this is the right thing to do, for so many reasons, and I’m pleased with my progress thus far.

I’ll report back when I’ve hit my goal, which probably won’t be until early summer. In the meantime, when I ask you if this blog post makes me look fat, it’s okay to lie.

10 Things I Wish I’d Known When I Was Younger

No regrets. Just a few things that would’ve made life easier if I had figured them out sooner:

10 Things I Wish I’d Known When I Was Younger 

1. Many people are in bad circumstances through no fault of their own. Not all, but many.
2. Buy long-term care insurance. It’s one of the essential insurances, along with homeowners, life (but not nearly as much as is recommended), automobile, and disability (if available from your employer).
3. Stop concerning yourself with what other people think, except when they are right and are just trying to keep you from doing something stupid.
4. Expand your comfort zone, and then expand it a little more.
5. Build more stone patios and fewer wooden decks. Decks lift you up and away from the earth. Patios keep you grounded. Plus, patios are wheelchair accessible.
6. Stop working for medium to large corporations. Sometimes it’s a necessary evil to gain experience, but over time corporate life can suck the life out of you.
7. Almost nothing is as big a deal as you make it out to be. Let things go. This too shall pass, except maybe MS. That’s a freaking huge deal.
8. If you have mobility problems, purchase a one-story house in the city, now, not 10 years from now.
9. Make more of an effort to meet all sorts of people, not only people just like you.
10. The greatest feeling in the world comes from helping others.

Here’s a bonus list:

10 Things I’m Glad I Figured Out When I Was Younger

1. Don’t buy insurance for ultra-specific purposes, like your new TV or laptop. Your insurance policy for these items is called a savings account.
2. High maintenance, pedestal women are trouble.
3. A positive outlook is a self-fulfilling prophecy (thanks, Mom).
4. Learn the basics of personal finances, and adhere to them.
5. Don’t buy into negativism. Don’t be mean.
6. Take risks.
7. Change is good.
8. Everything doesn’t happen for a reason. Sometimes, shit just happens.
9. Low expectations stave off disappointment. To clarify, I’m not saying you should dream small. I’m saying you shouldn’t make your happiness contingent upon best case outcomes.
10. Facts prove theories; anecdotal evidence, testimonials, and stories don’t (thanks, science class). 

Agree? Disagree? What would you add to either of these lists?

Accessibility Adventure

It’s Friday night, and it’s my sister-in-law, Diane’s, birthday. My brother, Tom, and she have booked a room in downtown Portland, at the Regency Hotel for the weekend. My other brother, Andy, and his wife, Karen, have booked a room at the same hotel, just a short drive from our house.

The six of us make up a diverse group regarding politics, religion, texting versus calling versus emailing, our philosophies on tipping waiters and waitresses, food and drink choices, and temperament. But we share a devotion to the Red Sox, the Patriots, the great State of Maine, our individual families, and to one another. We get together often and always have a great time.

We decide to meet at their hotel bar, the Armory. My iBot battery charge is low, so I don’t bring my stairclimbing wheelchair. I’m not concerned because I have been to this bar before, and I know it’s accessible.

There are four steps down from the hotel entrance to the bar floor, but they have an elevator. I just can’t remember where. Kim asks the bartender, and he says, “I’m afraid the elevator isn’t working at this time.” Bad start to the evening. One of the reasons my brothers chose this hotel was because they liked the bar so much. Already, accessibility issues, my accessibility issues, are impacting the group. But nobody wants to make me feel bad, so the change in plans is dismissed as insignificant.

We find another, accessible bar to have some drinks and appetizers, and then arrive at Vignola Cinque Terre, where we have dinner reservations. They direct us to a handicapped accessible entrance which works well. We have so much fun at dinner we decide to set out to one last bar for a nightcap.

We reach Ri Ra, and it's already packed on the bottom floor. This is ten o’clock on a Friday night after all. We decide to go upstairs where we know it will be less crowded. Everyone except Kim and I take the stairs. We follow a long hallway to where we know the elevator entrance is located. We have used it numerous times over the years. As we approach the elevator, our progress is stopped by a large pile of construction debris. The venue is undergoing renovations. One of the employees comes up to us and apologizes, but offers no recourse. I say to Kim, “Go up and get the others, and we’ll have to try somewhere else.”

As Kim and the others are headed downstairs toward me, a manager offers to clear out the area in front of the elevator. Assuming it will take too long, Kim declines the offer. The manager apologizes and tries to get us to stay, but our momentum, emotional as much as physical, carries us out the door. 

This is particularly disappointing for me. Twice during this evening, our group couldn’t enjoy a top-notch venue because of my accessibility issues. But, to their credit, nobody directs their disappointment toward me, but rather toward establishments that don’t give wheelchair access a priority.

We head across the street to a nondescript hotel bar and have our last round. Someone in the group says, “Not a very good night for you, Mitch.”

“True, but at least I get a blog post out of it.” Everyone laughs.

The next night, Saturday, we meet Tom and Diane at the Armory, the same hotel bar where we had tried to meet them on Friday. This time, I use my iBot wheelchair.

At the top of the stairs, one of the patrons comes up to me and says, “I saw you earlier in the day when you were up on two wheels. That’s the coolest wheelchair ever.”

“That was nothing,” I reply. “Watch this.” He is suitably impressed as Kim guides me down the stairs. After dinner and a drink, we decide to call it an early evening. The bar area has become full, and people aren’t shy about gawking at us as we ascend the stairs. When Kim gets me to the top landing, the crowd breaks out in applause, and Kim takes a bow.

Three takeaways:

Just because certain elevators and lifts don’t get a lot of use by people in wheelchairs, they need to be available and in working order at all times.

This weekend excursion highlighted the importance of having a wheelchair like the iBot. As most of you know, it’s no longer for sale, but I’m pretty sure Dean Kamen, the inventor, hasn’t given up.

My wife, my brothers, and their wives are the best. Nobody let the accessibility issues ruin our fun. 

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.

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.

Alice

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.

I 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?

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.

White Christmas? No Thank You

I get it. Global warming might be the most serious threat facing humanity in the long-term: coastal cities underwater, extreme weather events, the elimination of the Arctic and Antarctic ecosystems. What a terrible thing. Worse than terrorism, texting and driving, and Donald Trump combined.

And yet, when we experienced record warmth on Christmas Day in the Northeast, I couldn’t help but smile. I have an excuse, however, an exemption. I’m a wheelchair user in a walkable neighborhood, and the longer we go without snow, the more mobile I am. The more mobile I am, the happier I am. When I’m happy, I smile. I am essentially smiling about the destruction of the planet. Good thing for the exemption, or I might feel guilty.

On Christmas Day, I left the door open to our back porch for the first time in a couple of months. I went out onto my deck, down the sidewalk, into the street, zipped past my neighbor Susan’s house and arrived at the ocean. I sat by the shore with no jacket. Phoebe barked at me for leaving her behind – normal summer stuff.

So, if it was up to me, and I had the power to stop global warming, would I? Yes, I’m pretty sure I would suck it up and do the right thing for the world. I’m such a softy. But, while I officially hope the climate returns to normal and the planet survives, I can’t suppress my smile when the grass is green – it’s not even brown – in my front yard in December.

I’m unsure how the future will play out. In one scenario, the planet will remain habitable for humankind. In the alternative scenario, I will be able to wheel my way to Friday happy hour at the Snow Squall all winter long. Either way, I win.

Talking With Your Hands

Most of us don’t appreciate the extent to which we talk with our hands. It’s an unconscious thing.

I’ve noticed a couple of instances lately, where people talk with their hands and are almost powerless to stop. The first: my physical therapist. He is a great guy, a top-notch PT, and a delightful conversationalist. But it’s nothing short of comical when we become engaged in a deep conversation. He wants to continue manipulating my shoulder joint to alleviate discomfort, but he also wants to respond to what I’ve said, and he can’t do both at once. He’ll silently manipulate for a couple of seconds, attempt to say a few words, stop manipulating so he can speak freely using his hands, realize that he’s not manipulating anymore, put his hands back on my shoulder, rinse, lather, repeat. I only laugh at him on the inside.

The second person: my wife. Fresh from a PT session, Kim recently drove me to my monthly writers’ club meeting. She had an exciting day at work and communicated as much to me in an animated manner. Her hands kept flying off the steering wheel so she could talk. I told her the funny story about my PT and begged her to keep her hands firmly in place. She did, but I’m sure it’s not a permanent fix.

I can’t remember if I was a hand talker in the past. If the stereotype about Italians is accurate, I probably was. But I’m clearly not anymore. I make no wasted, unconscious movements with my hands. No fidgeting. No fingernail chewing. Any movement takes planning and effort, so I’m aware of when my hands are in motion, which isn’t often.

However, if I watch you feed your one-year-old child spoonfuls of puréed carrots from a jar, I’ll open and close my mouth in unison with her. That can’t be helped.