Tuesday, October 17, 2017

Book Update

You’ve been so very patient. I announced here, a long time ago, that I was writing a book and it was almost done. Obviously, I lied.
Given that this is a memoir, and given that I’ll only have one chance to tell this story, I’ve been rewriting and editing and tweaking. Finally, I am only a couple weeks away from being finished, at which time I will start looking for an agent or a publisher. That process will take months, but if I get no bites I will self-publish next year. I promise!
As a reward for your patience, please enjoy this excerpt from the chapter entitled "Smells Like Money." 
***
    I was the youngest, born in October of 1963, five weeks to the day before the assassination of President Kennedy. For the remainder of my childhood years, Dad teased the men in town who weren’t lucky enough to have produced a son, let alone three, by offering his assistance, guaranteed boy, first try. When Mom heard him say this, she only rolled her eyes. On this subject, Dad was all talk.
Our little town was situated deep in the woods of Maine, the most densely forested state in the country. Tourists flocked to our picturesque coastline. Other than sportsmen, however, most visitors didn’t travel inland, and we preferred it that way.
People from away offended our sensibilities in countless ways, and we didn’t need their money. Our town did quite well, thank you, because we knew how to convert trees into paper, effectively spinning straw into gold.
Men like my maternal grandfather, Carl, cut and limbed trees at nearby forest operations. Pulp trucks loaded the timber and headed for the paper mill in the center of town. Every day this convoy paraded by our homes and businesses—a constant reminder of what drove the economy in our town, what put food on our tables, and where hundreds of our residents spent so much of their lives.
When the logs disappeared into the mill, men like my father and my paternal grandfather took over. They chipped, steamed, digested, washed, and bleached the fiber to a pulp. This pulp was then refined, colored, filtered, dried, cut, and wound into giant paper and tissue rolls, before being packaged and labeled. The finished products emerged from the other end of the mill where they were loaded into a separate fleet of trucks heading south. Always south. To the north there were nothing but more trees, potato fields, and the Canadian border.
Only the company’s top minds and most senior employees understood these complex processes. To everyone else, both workers and townspeople, it may as well have been magic. But the magic came at a price. The towering smokestacks emitted water vapor, soot, and airborne toxins in clouds of white, brown, or sometimes black. On clear days, this discharge blasted high and true, like a steam locomotive. On humid or drizzly days, however, it oozed out the top of the stacks, never rising far enough to be swept away by the prevailing winds. This viscous haze enveloped the town and permeated our homes.
Workers who picked up cigarettes and beer at Sampson’s grocery store or grabbed a bite at the Rose Bowl Restaurant wore the stench as a badge of honor rather than a source of shame. It meant each of them had a secure, high-paying job, presumably for life, unlike the store clerks and restaurant staff who waited on them.
At least a dozen towns in Maine smelled as bad or worse than we did. Rumford and Millinocket reeked, and Westbrook polluted Maine’s largest city, Portland. But no other mill town had a name with such an unfortunate rhyme. “Stinkin’ Lincoln!”
My father didn't put up with the insult. When people from away disparaged his town and his employer, he growled, “Smells like money,” and that would be the last word on the matter.  

Wednesday, October 4, 2017

Preserving My Identity

I've been asked how it is that I maintain my identity – how it is I keep MS from defining who I am.

To a large extent, I don't.

Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a bit more interesting than it otherwise would've been, but that was all.

As the disease began to have a profound effect on my daily activities such as walking and using my hands, it became more and more difficult to keep MS from shaping my personal identity. So I didn't fight it. I embraced it.

I am a husband with MS, a friend with MS, a brother and a father with MS. I am a blogger with MS. Note that MS doesn't supplant my identity; it enriches it. Don't get me wrong. I'm not saying that having MS is a good thing. It absolutely sucks. But embracing the fact that I have MS doesn't.

Granted, for some people with MS it may be important to keep the disease out of your public identity, often for reasons having to do with career preservation. I get that. The only advice I have for you, if you need any, is this. When MS needs a chunk of your time – whether for doctors’ appointments or naps – give it what it demands, then return to your other interests without apology or guilt. I did that for quite a few years, and I was largely successful.

I'm not only a guy with MS. For brief periods of time I’m able to put the disease out of my mind. The best distractions are quality television and movies, books, conversations, writing, or any task requiring concentration (even though my ability to concentrate is diminished). 


How do I identify myself in my dreams? It's a mishmash of walking Mitch and wheelchair Mitch, often switching back and forth indiscriminately.

I'd like to think that people I'm interacting with, at least for brief periods of time, can also forget about the disease. But to imagine that it's ever far removed from who I am would be an act of denial.

Please consider the notion that accepting these changes to your identity does not represent failure or defeat. It may simply be the best way to deal with a new reality.

I'm now that guy with MS, and being identified as such is not a bad thing. It's just a thing.

Wednesday, September 20, 2017

True Stories About Fingers and Toes

“Watch your toes. My wife says it hurts."

That’s my go-to line when I work my way through a crowd, and it serves two purposes. First, the space allotted for my safe passage widens a little. Second, it lets people in the crowd know that a human being, with a sense of humor, resides inside the crippled body being conveyed across the room by such an imposing, toe-flattening, wheeled contraption.

Despite the laughs my go-to statement generates, I speaketh the truth. I have run over Kim’s toes four times, and her consistent reaction leads me to believe that it hurts. The first three times, I directed one of my four iBOT wheelchair tires over her toes. That chair weighs about 300 pounds, and I weigh north of 200 pounds. In each instance, she expressed her disappointment in a clear manner, but no permanent damage resulted. No broken toes.

The fourth time I ran over Kim’s toes, I was again in my iBOT wheelchair, but I was in balance mode. So, instead of the considerable weight being distributed on four wheels, it was distributed on only two. We were in a crowded elevator on a cruise ship, and she wore only sandals. She calmly but urgently told me that I was on her toes, and I calmly but urgently moved off them. The other cruisers seemed mildly amused, not understanding how much pain Kim was in. Remarkably, no broken toes again.

Everyone is familiar with that famous saying, “Wheelchairs don’t run over people’s toes. People run over people’s toes.” I’m here to tell you that it’s a lie. A few weeks ago, while I lay in bed, Kim stood alongside my 425-pound Permobil wheelchair, grasped the joystick, and maneuvered the chair around our bedroom. Through no fault of her own, the chair decided to run over one of her feet. She screamed, tried to pull her toe out from under the wheelchair, pulled harder, succeeded, and flew headlong across the room into the opposite wall, crumbling to the floor.

Not knowing what the wheelchair had done to my wife, I was confused by her unusual behavior. She explained that the God Damn wheelchair had run over her foot. I was no longer confused. Although this was the most dramatic of the five foot-flattenings, Kim was again no worse for the wear.

What about strangers’ toes? How many of them have I run over? Too many to count. When I can, I apologize. But often I’m in a mob, and I don’t even see the person who screams out in pain. Once in a while, the victim apologizes to me. Go figure.


That’s it for toes. Now, let’s move on to fingers. Why would anyone put their fingers under a wheelchair tire? They wouldn’t. Why would anyone put their fingers in the mouth of a person in a wheelchair? Allow me to explain.

Today, the food I eat falls into one of three categories. There are some foods I can still put in my mouth without assistance, like wraps. There are meals that my OBI dining assistant helps me with. And there are foods that Kim feeds me from her hand to my mouth, like ham and cheese sandwiches.

Last week, Kim was feeding me just such a sandwich, and it got down to the end. Because I prefer larger bites of food, and because Kim is a nice person, she intended to have me take the remainder of the sandwich as a single bite. Understandably, Kim fears that someday I will choke on one of my large bites of food, and the Heimlich maneuver won’t be easy, so she prefers I take smaller bites. Because I am a little afraid of my wife, I intended to take the remainder of the sandwich in two bites.

Somehow, her fingers passed below the maxillary incisors in my upper jaw and the mandibular incisors in my lower jaw. Unaware of this intrusion, I bit down hard so as to make a clean cut halfway through the remaining portion of the sandwich. Kim screamed and pulled her bloodied finger out of my mouth.

The bleeding stopped soon enough, however, and Kim didn’t lose the tip of her finger, although I’m afraid that fingernail won’t survive the winter.

Now, we have new eating procedures. Kim never lets her fingers cross the imaginary line between my upper and lower teeth. I never bite down hard until I know that my teeth are shredding food as opposed to human flesh. Seems to be working well so far.

For all of you folks who think being my caregiver is a glamorous job, filled with witty repartee and intellectual give-and-take, think again. It’s fraught with peril. But we learn from every mistake, and for the time being, Kim still has all her fingers and all her toes.

Wednesday, September 6, 2017

A Better Way to Weigh

I graduated high school at a lean, muscular, 180 pounds. It’s been a struggle ever since. But I kept things under control by eating less, exercising more, and monitoring my weight by stepping on scales. Today, I exercise not at all, and monitoring my weight has been a logistical challenge because the wheelchair keeps getting in my way. And I love to eat. Given all that I’m going through, don’t I deserve to eat what I want? (Hint: the correct answer is no.)

For a number of years, I utilized a local rehab hospital where I transferred to a special chair-scale. That involved making an appointment, driving across town, and bothering a nurse. After a while, the transfers became difficult, and I moved on.

I found another hospital with a different type of wheelchair scale — one I could drive up onto. I only needed to weigh my empty wheelchair once, and do the math. This worked for several years. As with the first hospital, however, I needed to make an appointment, have Kim drive me across town, and bother a nurse. When I bought my new Permobil wheelchair in December of 2016, the wheelbase was too long to fit on the wheelchair scale.

In the spring of this year I found a chemical engineering classmate of mine who is the mill manager at a local paper mill. He had a large floor scale in his receiving department and was good enough to allow me to use  it. But, once again, I had to make an appointment, bother a busy person, and have Kim drive me across town.

A few days ago, we figured out a way to weigh me at home. Hallelujah!

I purchased a small crane scale off Amazon, and Kim inserted it between my overhead lift and the sling I sit in for transfers. We can read the number off the scale, and I know my weight instantly without making an appointment, bothering a busy person other than Kim, or driving across town.

It’s little victories like this that constitute the forward portion of my "one step forward and two steps back" life.

My new problem? Now I have no excuse for failing to maintain a healthy weight.




Wednesday, August 30, 2017

Ten Obscure Activities I Miss Because of MS

There are obvious things I miss: walking, driving, taking care of myself in so many ways. But here are ten more obscure activities that I wish I could still do on my own.

Breaking a sweat — I can no longer get my heart rate up high enough to break a sweat. I can’t stand to sit in the sun, so I don’t break a sweat that way either. I used to like that feeling once in a while.

Blending in — Just once, it would be nice to blend in with the crowd. When you’re in a wheelchair, you’re either overlooked (not the same as blending in), or you stick out.

Sitting in the stands at a sporting event — I love to go see the Red Sox and Patriots play, but I can’t just tag along if friends have tickets. I can’t purchase tickets on the secondary markets such as eBay or Ace Tickets. I either get wheelchair accessible tickets through the ticket office, or I watch at home (or, there were those three times I got myself into a luxury box).

Pondering the future — I can’t imagine what life will be like more than a year or two in the future, so we don’t make long-range plans other than having our home as accessible as possible and our finances ready for any eventuality. We don’t talk about what we will do when Kim retires, for example.

Swatting flies — Luckily, I live in an area without many nuisance flies. But once in a while, a housefly or a mosquito torments me, and I have little recourse. Bastards.

Removing credit cards and paper money from my wallet — It’s not a big deal, because clerks are glad to help me out, but it sure would be nice to use my credit card or handle cash on my own.

Cleaning my sunglasses — Some people are perfectly content to wear sunglasses with smudges all over the lenses. I don’t fall in that category, and my glasses tend to have more smudges than normal because I handle them so clumsily.

Wiping or blowing my nose — I don’t get many colds, but when I do, it gets messy.

Sleeping alone — I hesitate to mention this one, because I know there are people out there who are tired of sleeping alone. My point is this. Because of my disability, Kim can’t sleep away from home. She can’t go on business trips, weekends away with friends, etc. I wish she could.

Flossing — You know that wonderful feeling you get after flossing? I wish… No, I can’t do this. I can’t lie to all of you. I never flossed before MS, and I never floss now. Don’t tell my dental hygienist. What she doesn’t know…


For having read this far, you get a bonus list:

Five Activities You Might Be Surprised I Can Still Do

Taking a nap — My mother was in a wheelchair, and she didn’t have any way to comfortably take a nap during the day. But modern wheelchairs recline at the push of a button. To prove it, I’m going to take a nap before I get to the end of this…

Going out alone for lunch — Because I live in such a busy neighborhood, I have a choice of places I can go for lunch. It’s getting more difficult to get the food from plate to mouth, but I still have a few lunch items that work for me.

Controlling the lights, audio/video/computer/cell phone in my house, with ease — If you’re not aware of how I do this, read my blog post here.

Meeting people — I meet so many people online or in my neighborhood, I have trouble keeping track of them. I’m not lonely. Not even close.

Sitting by the ocean — In my neighborhood, I have at least five awesome places where I can sit by the ocean.

Feeling good about my life — I’m not in denial. I’m not happy I have MS. But when I compare my life to the lives that people have lived for thousands of years, or the lives millions of people are living at this very moment, I’ve got nothing to complain about.

Tuesday, August 22, 2017

On My Own

My daughter and son-in-law moved out this summer, with our blessing and best wishes. This left Kim and I empty-nesters, which changes things.

I didn’t feel the effects until Monday, when Kim went back to work as a middle school guidance counselor after having a couple of months off. My disease is steadily progressing, and my abilities are only declining at the same time less people are around to help me. The challenges resulting from this living arrangement will require a combination of financial investment, ingenuity, and organizational skills. You know — stuff an engineer does.

Financial

I’m going to invest in items like automatic door openers, at least for my front and back doors.  Also, I’m going to hire some help — home care professionals — to stop in a few hours a week.

Ingenuity

Kim and I are brainstorming ways for her to prepare my lunches in such a way that I can feed myself. Another problem we haven’t figured out yet is how I can put my coat on and take it off once the weather gets colder. If we don’t solve that one, I’ll be stuck in the house during Kim's work hours in the winter — inconvenient but not catastrophic.

Organization

I put together a checklist that I’ll look over before Kim leaves for work in the morning, to make sure everything is set up as well as it can be for me. Here’s a partial look at that list:
  • Lunch items all set up for me
  • a drink with a straw in it set up at the table
  • a couple of snacks ready to go
  • eyedrops where I can reach them
  • sunglasses where I can reach them
  • accessible scissors for opening packages
  • remote controls
  • windows open or closed according to the weather
  • make sure I can reach the device I currently wrestle with to get back door opened and closed
  • medications ready
  • dog and cat fed and watered
  • dog has on her invisible fence collar
  • my cell phone in good position and coupled with computer
  • several more items, some of which modesty prevents me from detailing
Note that all these items are addressed only after Kim gets me out of bed, washed, groomed, dressed, and otherwise presentable.

The good news is that Kim is only a few minutes away at work. My goal is to not bother her, but it’s comforting to know she can be home quickly if she needs to.

I’ve managed considerably more complex engineering projects over the years. This should be a piece of cake.

Wednesday, August 2, 2017

Ocrevus—My Latest Attempt to Stem the Tide

Ocrevus probably won’t work for me. It's best suited for younger patients with less disability, and it's more effective for people with active lesions, which I don’t have.

But I’ve got nothing else to try.

And, if it does work, even a little, wouldn't that be a wonderful thing?

Ocrevus is the first drug to gain FDA approval in the United States for the treatment of primary progressive multiple sclerosis, my variety of MS. Its predecessor, Rituxan, has been used off label for years with some anecdotal evidence of success. In 2005 through 2009 I participated in a clinical trial for Rituxan, and I used it off-label afterward until my insurance company refused to pay for more. I experienced some reduction in the speed of disease progression. But I was younger, and I had less disability, so I don’t expect to pick up where I left off.

There’s a bit of controversy surrounding this drug. Some people speculate that if the patent had not run out on Rituxan, the pharmaceutical company, Genentech, would have run another trial of that drug years ago, and it might have been available sooner and at a lower price than Ocrevus. Company officials counter that the differences between Rituxan and Ocrevus are the reason why one drug failed a clinical trial and the other passed.

If you want to get into the details of this argument, I recommend reading this article from my friend the Wheelchair Kamikaze.

I had my first 300 mg IV infusion of Ocrevus on July 19, and my second 300 mg infusion today, two weeks later. I was at the clinic for about five and a half hours each time. Every six months, for an indefinite period, I will receive a single 600 mg infusion. The side effects are minimal.  The nurse had to stop my first infusion for about 20 minutes when I started getting itchiness around my head. The second infusion had no incidences. The drug is not without risks, but given my level of disability, I scoff at its risk profile.

The cost? I will be responsible only for a co-pay and possible deductible, but my insurance company will be on the hook for about $65,000 a year.

When will I know if it's helping?  Ask me this time next year. It takes that long to notice changes in my disease progression.

Ocrevus probably won’t work for me, but I'm a desperate man.  I'll be carrying my 99 pounds of skepticism and 1 pound of hope with me to every infusion. Well, actually, Kim will carry a large share of the load. It's too much for me alone.

Tuesday, July 25, 2017

A Serendipitous Encounter  

Serendipity: finding valuable or agreeable things not sought for.

The hostess at our favorite restaurant, Snow Squall, seated us three tables away from the other couple. They were about our age, maybe a few years younger. In their case, she was the wheelchair user, and he was the walker.

There was no way I could just let this go.

“I’m going to speak to them. I’ll be right back,” I said to Kim.

I approached the couple and began, “Excuse me. I don’t see a lot of wheelchair users around here, and I just wanted to say hello."

The lady in the wheelchair turned to me. She had dark hair like my mother and glasses like my mother.   Her level of disability — I could tell from her movements – was just like my mother's. And her smile, yeah, same smile. Of course, I didn’t lead with that comparison.

I learned they were passing through on their way from Ontario to visit relatives in Maritime Canada. They had selected this restaurant at random.

After a bit more small talk, I blurted out, “I have MS.”

“I was in a car accident six years ago. Injured my C5 – C6 vertebrae, eh” she replied.

My mother injured her C5 – C6 vertebrae. I let that slip out. I let the other stuff about her similarity to my mother slip out. I apologized for being creepy. She didn’t seem to mind.

The conversation was so interesting that I took a chance and said, “Would you like company for dinner, or would you prefer to dine privately?”

Both the husband and wife responded enthusiastically that we should join them. I called Kim over.

“We are Mitch and Kim, by the way.”

“Bill and Paulette.”

We enjoyed a lovely dinner, where we aired similar grievances about how disabled-unfriendly the world can be, but agreed that there’s never been a better time in history to be a wheelchair user. Bill encouraged me to speak with Paulette about flying on airplanes and going on cruises. She was only comfortable traveling to places by automobile. We compared and contrasted our countries' healthcare systems. We exchanged information about various adaptations each of us had employed. Their common theme was that Bill was handy and could build anything. Our common theme was that I am a techie, and I could buy and program things. Paulette and I shared the good fortune of having healthy spouses who undertook their caregiving responsibilities with equal doses of energy and love.

As we settled our checks, I invited Bill and Paulette to our house, a couple of blocks away, to continue the conversation and for me to show off all my adaptability toys. They accepted and stayed for an hour. I told them about my blog and showed them pictures of my mother. We exchanged email addresses and will almost certainly never see one another again, although I hope we stay in touch electronically.

Sometimes it pays off to get out of your comfort zone, walk up to complete strangers, and start talking to them.

Serendipity indeed.






Tuesday, July 18, 2017

Summer Cruise 2017 – Part 4 of 4 – Independence Days

This was billed as the Independence Day cruise. We would dock overnight in Halifax, Nova Scotia for Canada Day, July 1, and we would dock overnight in Boston for America’s Independence Day, July 4. Each city would feature celebrations and fireworks. I love fireworks. Not everyone feels the same way. Can someone please explain that to me?

Halifax

When we pulled into Halifax on the morning of July 1, it was foggy and drizzly, and none too warm. We put on our long pants and light jackets and headed out into the city. What a wonderful surprise Halifax turned out to be. The waterfront had been redeveloped. There were restaurants, stores, brewpubs, condominiums, and boats. Lots of boats.

Not far from the ship, we stumbled upon a rib cookoff, part of the Canada Day celebration. We had never seen such an event on that scale before. These vendors were serious. They displayed their trophies prominently and had huge advertising. As we wandered about, we began to appreciate the love these Canadians felt for their country. What a festive mood they set.

After partaking of butter-dipped corn on the cob and splitting a rack of ribs, Kim and I left the cookoff and found ourselves in a beer garden. We harvested a couple of IPAs, ripe on the vine. Our plan was to continue through the city for the remainder of the day and stay out late for the fireworks. The weather discouraged us, and we returned to the cruise ship by late afternoon.

Around fireworks time, we gathered with others on the ship to view the show from a distance. We were too far away, and the fog was too thick, so, although we enjoyed Halifax during the day, I didn’t scratch my fireworks itch.

Boston

Boston was a whole ‘nother story. We strolled off the ship shortly after lunch and were greeted by sunshine and blue skies. We walked a couple hundred yards to the Silver Line bus stop. As we waited for the bus, we realized we had no cash for fare. Kim spotted an ATM machine and charmed five $20 bills out of it. When the bus pulled up to the stop, we asked the driver if he could break a twenty for us, and he said, “Never mind. You can ride for free today.” And thus began a great day in Boston.

The Silver Line dropped us at South Station, where we met up with Randi and Al, who live in the city. They are the sort of friends who drop everything and entertain us whenever we get to Boston.

The four of us made a quick plan for the day and set out by foot on something called the Greenway, a lovely walking path along on what used to be an inner-city highway. We ended up in one of Kim and my favorite areas of Boston — Quincy Market. There, we enjoyed a cold drink, several talented street performers, and the general positive vibe of Boston on a sunny July 4.

From Quincy Market, we walked a few city blocks to the nearest Red Line station, purchased subway passes with our credit card, and headed across the Charles River to the MIT campus in Cambridge. We wandered around that fine city until our 7:30 reservations at Legal Seafood. We enjoyed a wonderful meal with Randi and Al then mosied toward the Charles River to stake out our spot for the fireworks.

When the first fireworks began, I found myself behind a tree, and could barely see the explosions. There were people all around us, and of course, the good spots were already occupied. Randi, Al, and Kim squirmed their way into decent viewing positions. I dove into the crowd of standing people in my wheelchair — a move that would typically result in the wheelchair occupant being face-to-face with butts not fireworks. Instead, I elevated as high I could in my iBOT and found myself in perfect viewing position.

The fireworks shot off directly in front of us so that the sounds rattled our eardrums and vibrated our breastbones. My itch was thoroughly scratched. At the end of the show, we said our goodbyes to Randi and Al. We headed, along with thousands of other people, to the Kendall station on the Red Line. The city had prepared well for the onslaught of riders, and soon we were on the subway and headed back toward the ship. At 12:13 AM, now on July 5, Kim looked up and noticed the time on the clock inside the subway car. She turned to me and said, “Happy Anniversary,” loud enough for others to hear.

“Oh, look at that,” I replied. “Happy Anniversary to you as well.” We kissed. Everyone in the subway car wished us a happy anniversary. Before we knew it, the Silver Line had dropped us off in front of our ship, exhausted, but in a good way.

Note: the kitchen made us this anniversary cake at the evening meal later that day.

Being part of celebrations in two great cities made this cruise memorable. But doing it as a wheelchair user, someone whose independence has eroded over the years, was extra special. This cruise was my own, or rather our own, Independence Day celebration.

Thanks for reading about our most recent cruise. If you have specific questions about this cruise or disabled travel in general, don’t hesitate to contact me through the comments section of this blog post or by clicking here.

click here for part 1

Wednesday, July 12, 2017

Summer Cruise 2017 – Part 3 –The Ship's Crew

The Celebrity Summit holds about 2450 passengers and 1000 crew. We often take the crew for granted. They work seven days a week for weeks on end and become a part of the ship to us. Almost invisible. On this cruise, I made an effort to connect with these individuals.

We sat at the same table for dinner most nights, so we had the same waiter, Adi from Indonesia, a most capable and engaging fellow. At each meal, he would take the four–compartment tray from my OBI dining assistant, cut my food up into the appropriately sized bites, and serve my dinner in the special tray. The first night I dined in my iBOT wheelchair, I showed him how I could rise up on 2 wheels. He was beside himself and asked me to do it again so everyone could see. I was happy to oblige.

Our assistant waiter, or waitress in this case, was known to us only as B, from Thailand. Her twin sister, A, worked a few sections over. To me, their proper names, as indicated on their name tags, were an unpronounceable collection of too many consonants and not enough vowels, so we appreciated the nicknames. B was so friendly and talkative that I got the feeling we sometimes caused her to fall behind, and she would shuffle off in a big hurry, but with smile intact.

There was a talented duo that played different venues each day — her on vocals and him on guitar. During one of their breaks at the Sunset Bar, our favorite outdoor watering hole, I struck up a conversation with the singer.

“I love your voice,” I began.

“Thank you so much,” she replied, flashing the smile she must’ve flashed the last thousand times she had received this compliment.

“Are you here just this week?” I asked.

“No, we have an 8-week contract on this ship.”

I then asked where else in the world the ship would be taking her over the next two months. She said, “A lot of Bermuda.”

She was friendly and receptive to my questions, so I went in for the kill. “Everyone wants to know — are you two a couple?”

“No,” she laughed. “We’ve been friends a long time, and most people assume we are a couple. In fact, the cruise ship provided us with only a single room at first.”

I asked about how difficult it was to score a gig like this, and she explained that cruise ship experience is prime resume material, and that these contracts are highly competitive. This confirmed my impression that the entertainment on cruise ships is top-notch.

One day, I set up my computer at a table in the cafĂ© so I could work on my book and look out at the ocean. I heard someone asking me in a strong Eastern European accent, “Are you making some sort of announcement?”

I turned to see a smiling lady in her 20s, removing dirty dishes from the next table. I said, “Excuse me?”

“You have a microphone. Are you making an announcement?” She giggled.

“No,” I laughed back at her. “I’m unable to type, so I speak to my computer through this microphone.”

Her eyes lit up, and she moved closer. “Are you a writer?”

I’m reluctant to self-identify that way, but she seemed so excited at the prospect that I responded, “Yes, I am.”

She couldn’t contain herself. “I am writer too. I have been published in Ukraine.”

We discussed our various writing projects, and she became intrigued by the premise of my book. She asked if she could send me some sample writing that she had attempted in English, and I let her know I would be more than happy to work with her. I haven’t seen anything yet, but I hope to.

Although the crew is mostly international, the captain of the Celebrity Summit is Kate McCue — the first female American captain of a mega cruise ship. She introduced herself to the passengers at the main theater on the second night of the cruise. At only 37 years old, and looking stunning in her high heels and evening gown, she didn’t fit the stereotype for a ship’s captain.

Midway through the week Kim and I had some problems with the patient lift we had brought along to transfer me from wheelchair to bed, etc. Kim would pump on the lift arm and raise me up in the air. But as soon as she stopped pumping, I would slowly lose altitude. As the week progressed, this problem became more pronounced, to the point where she couldn’t stop pumping at all.

As we approached the port of call in Portland, Maine, where we live, I called my friend Darcy. I asked if I could borrow her patient lift for the remainder of the cruise. She agreed, and we arranged the handoff.

When Kim and I attempted to exit the ship in Portland, with the broken lift in tow, the crew stopped us, even though we had informed them a couple days ahead of time. Kim suggested that I go ahead and exit the ship and wait for her at the bottom of the ramp. I was causing a bit of a traffic jam.

After I had waited for about 20 minutes on the dock, a uniformed employee approached me. She was thin and wore aviator sunglasses. “Can I help you with anything,” she asked. The entire crew was so helpful on this cruise, and I had been asked this question so many times that I almost declined out of habit.

Then I looked down at her name tag and it read, Captain Kate.

“Perhaps there is something you can do. We are trying to get our broken lift off the ship so we can bring a replacement on board, but my wife has been trying to get clearance for almost half an hour now.”

“I’m aware of that request, and I thought it had been taken care of. I'm sorry. Let me see what I can do.”

She turned and looked up the ramp and said, “Is that your wife coming down the ramp with a lift right now?”

“You’re good,” I joked.

As Kim approached us with the broken lift, I introduced her to Captain Kate, and we complemented the Captain on a well-run ship (this incident being the exception).

I texted Darcy’s husband, Tim, and he met us at the ship with the replacement lift. I don’t know what we would’ve done if not for Darcy and Tim’s help.

I’m intrigued by the life that cruise ship workers lead, and I took every opportunity to engage them in conversation. I was not disappointed.

Click here for a sampling of what life is like for workers on a cruise ship.

click here for part 4
click here for part 1




Monday, July 10, 2017

Summer Cruise 2017 – Part 2 – Accessibility Challenges Don't Phase Us

If I had known the wheelchair accessibility shortcomings of the Celebrity Summit, I would not have booked it for a cruise. That would have been unfortunate, however, because we had a great time.

This was our third cruise. We found cruises #1 and #2 to be the most wheelchair accessible vacations we had ever been on. But those were larger and newer ships. So, although we were disappointed with the accessibility of the Summit, we weren’t surprised.

Before I delve into the deficiencies, it’s important to note that one of the primary reasons we chose this cruise itinerary was because it ran out of Bayonne, New Jersey. This meant we didn’t have to fly, which was, itself, an accessibility benefit.

Here are some of the challenges we faced:

No automatic door openers. Unlike the other ships, this one had no open buttons for cabin, cabin bathroom, public restrooms, or toilet stalls within public restrooms. I couldn’t get into or out of our cabin without Kim’s assistance. I couldn’t use the public restrooms without Kim’s assistance.

Tall and uneven thresholds all over the ship. I have a stud installed in the bottom of my wheelchair which couples with a receiver on the floor of my wheelchair van, safely locking me in place. I’ve had this for several months now, and it never bothered me until this trip. As I moved about the ship on that first day, this protrusion became caught up on many of the thresholds.

We called the maintenance department on the ship to help us come up with a solution. After surveying the situation, the maintenance man decided that the stud could be unscrewed, but he asked us to sign a waiver in case he broke something. We signed it. After removing the stud, I still found the thresholds jarring but no longer inaccessible.

Tender boats were not wheelchair accessible. We visited seven different ports. Five of them had docks, but at two ports, Bar Harbor and Newport, the ship had to anchor offshore. Small tender boats were employed to shuttle passengers back and forth between the ship and shore. On my previous cruises, the transition from ship to tender was wheelchair accessible. On the Summit, this was not the case. There were about five steps down into the tender boat.

On the second day of the cruise, Kim and I packed a bag to spend the day on Bar Harbor. We headed down to the deck where people were boarding tender boats. When we arrived at the debarkation point, Kim scoped out the situation and saw the steps. The crew expressed their regrets that the tender was not wheelchair accessible, and I wouldn’t be able to go into Bar Harbor. I explained to them that the iBOT, which I was sitting in at the time, could indeed climb stairs, and so I intended to go to shore.

“We will first have to check with our safety officer,” they explained.

“Fair enough,” I replied. “Let your safety officer know that I’m willing to sign a waiver.”

We decided to eat breakfast and check back later to hear the safety officer’s decision. We went to the breakfast buffet on the 10th floor, filled our plates with tasty morsels, and sat on an outside deck, where we were afforded an amazing view of Bar Harbor.

We had visited this tourist mecca so many times in our lives, but we had never seen the view from this perspective. There were two other large cruise liners in town, and we knew things would be crazy. We soon lost our interest in fighting the crowds in Bar Harbor and decided we would spend the day on the relatively empty ship. By the time we returned to the debarkation station to let them know that we were no longer interested, the crew had changed over, and nobody knew what we are talking about.

A few days later, in Newport, Rhode Island, we gladly stayed on the ship and enjoyed its amenities.

These accessibility disappointments detracted from our enjoyment but didn’t ruin the vacation for us. I’ll consider this a lesson learned and avoid older and smaller cruise ships in the future. In my next blog post, I’ll focus on some of the positives about this vacation, of which there were many.

click here for part 3
click here for Part 1

Saturday, June 24, 2017

2017 Disabled Cruising Again – Part 1

Do not adjust your computer/tablet/phone. You read that correctly. For the second time this year we are cruisin’.

In February, accompanied by my brothers and their wives, Kim and I sailed throughout the Caribbean for seven nights aboard the Celebrity Silhouette. Beginning this week, Kim and I will be sailing by ourselves (along with a few thousand other people) for ten nights on the Celebrity Summit.

We depart from Cape Liberty, New Jersey, which is just across the river from New York City. Note that our fourth stop is Portland, Maine. The terminal is walking distance from our house. I proposed to Kim that she could take advantage of that stop to go home and do a load of laundry. My suggestion was not well received. I can’t figure that woman out.

Anyway, perhaps something interesting will happen on this trip and I will blog about it. Stay tuned.

click here for Part 2

Tuesday, June 13, 2017

The Yin and Yang of MS

I am dependent but not helpless.
I am left behind, but I enjoy time alone.
I am fragile but not weak.
I am embarrassed but not ashamed.
I am disabled, but I'm not hungry, wet, cold, or abused.

I don't walk in the woods, but I still sit by the ocean.
I don't sleep well at night, so I can't stay awake during the day.
I don't travel as much, but people come to me.
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.

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 tomorrow, but I live for today.

Tuesday, June 6, 2017

Eating: A Medical Necessity?

I’ve passed a lot of milestones in my disease progression—cane, crutches, scooter, wheelchair, disability retirement, the involvement of my upper extremities, and more. Recently, I’ve encountered another milestone—feeding myself.

A couple of years ago, Kim began helping me with certain tasks like cutting my steak. Then, with the assistance of my OT Maren and my friend Michael, we devised adapted utensils for me. Those sufficed for quite a while, but not so much anymore. For the past few months, at least half the bites of food I have consumed came from Kim’s hand, not mine.

Back in 2008, when it was time for me to graduate from scooter to wheelchair, I stumbled upon the iBOT, and because of its advanced technology, I felt better about the transition. Now that I need assistance in eating, I found some cool devices to lessen the blow as well.

Liftware Level

I bought one of these spoons, and it’s amazing. Check out the video, below, or click here.

I call it my “Harry Potter” spoon. The Liftware Level costs $200 and is not covered by insurance.

Obi

I bought one of these, and it reminds me of the iBOT. While making my life better, it serves as a conversation piece and a crowd pleaser, not simply a piece of medical equipment. It is battery-powered and mobile enough to take with me to most places where I might dine. Check out the video, below, or click here.


Obi it is expensive – $6000. I filed a medical insurance claim, and it was rejected. Apparently, being able to eat is not a medical necessity. I am filing an appeal, but I'm not sending my Obi back, no matter what.

Thanks go out to my occupational therapist, Maren, for introducing me to both products and helping me integrate them into my life.

Closing Thoughts

Losing the ability to take care of myself is frightening, but technology keeps offering solutions, and I love technology. I am aware, however, that many disabled people can’t afford these expensive devices. We need to find ways to make these adaptations available to everyone. 

Tuesday, May 30, 2017

My Plans for World Domination on World MS Day

Wednesday, May 31, is World MS Day, and I have big plans. Because their readership is so much larger than mine, I’m going to hack into the Living With MS Facebook page operated by Healthline.com and take over their feed for the day. While I have the reins, I will execute my evil plan of engaging readers on a variety of MS topics related to my subtype — primary progressive MS. To initiate the conversations, I’ll share content from Healthline and from my blog, Enjoyingtheride.com

Let’s see how much we can learn from one another. Please share this announcement freely, (except with Healthline.com, I don’t want them to see me coming) so that we can connect with as many folks as possible tomorrow. See you then!


Tuesday, May 16, 2017

When You Have MS, You Can’t Live Without…

A couple of months ago, I received an invitation from Healthline.com to respond to the above prompt. They asked the same question of other MS bloggers. Here is a link to our collective responses.

This is what I wrote:
“With MS, I’ve learned never to say there’s something I can’t live without, because that may be the very thing I lose next. But in the spirit of this question, one thing I would hate to lose would be my voice. I use voice recognition software to write my blog, the book I’m working on, emails, and texts. I use my voice to operate lights, ceiling fans, shades, and televisions. I use my voice to remind my wife that I love her. Given that I’ve already lost all of the function in my legs and much of it in my hands, if I lost my voice, life would become much more difficult.”
I struggled a bit with this assignment. I understand what they were after — describe one aspect of your life that is most important in easing the burden of MS. However, if you take the prompt literally, it asks what aspect of your life you would die without. I spent the last sixteen years ensuring there is nothing in my life that I couldn’t live without, because when you have MS, everything is on the chopping block.

When I was healthy, if you had told me that in the next decade or so I would lose my ability to snowmobile, hunt, golf, type, write, walk, work, or take care of myself in terms of eating, dressing, and grooming, I might’ve fallen into despair.

Indeed, one day I may become overwhelmed and unable to maintain my positivity, but it won’t be the result of losing something I can't live without. It will be that there aren’t enough things to live for, and I’m still a long way from that point.

Tuesday, May 2, 2017

My New Wheelchair – Permobil F5 VS

Getting a new wheelchair is not like getting a new hairdo, or a new outfit. It’s way beyond that. Getting a new wheelchair isn’t the same as having your bathroom redone or trading in your car. It’s not like getting a new job or taking a new lover (says the guy who married his high school sweetheart). Those pale in comparison. The best analogy I can come up with is that buying a new wheelchair is like buying a house, if you spend all day, every day, in that house. It’s a big, freaking deal.

Medicare, and therefore most private insurance companies, allows a new power wheelchair every five years, so I needed to choose wisely. I did my research. There have been so many changes in the power wheelchair marketplace in five years’ time. When I think back to my mother’s wheelchairs, beginning in 1970, it blows my mind.

For its time, circa 2012, my Invacare TDX SP wheelchair was quite something. It’s now semi-retired, serving as my emergency backup. I still have my iBOT wheelchair, but I use it sparingly because there are no more parts and no more service available.

Let’s take a look at my new wheelchair, a Permobil F5 VS.

Drawbacks

There are a couple of things I like less about this wheelchair compared to my previous one: 
  • Because the chair is front-wheel-drive, my turning radius is longer, and so my maneuverability is poorer. 
  • This chair weighs about 150 pounds more than the Invacare. In most cases, that’s not an issue, but it can occasionally be. 

Advantages 

  • Leg extension control: In my previous chair, I could elevate my feet. But in doing so the foot pedals would impinge on my legs such that my knees would rise up a few inches, and that made for an uncomfortable position. With this chair, the legs can extend while they raise up. Beautiful thing. 
  • Elevates 14 inches instead of 8: Yes, size matters. That extra 6 inches allows me to sit comfortably at high-top tables in restaurants and brings me closer to eye level when I find myself among a group of standing individuals. Doesn’t hurt when I try to reach something on a high shelf either. 
  • Seatback Recline: In this chair, I can adjust the seatback angle to more comfortable positions, and it even allows me to lean forward for activities like brushing my teeth and eating messy foods. Coupled with raising my legs, this feature allows me to lie flat in the chair as if it were a bed, which I have done more than once already. 
  • Preset modes: There are many actuators in my chair, and I have individual control of them. But I also have common positions I would like to get to without holding down the actuator buttons until each one is in the right position. For example, when I want to nap or watch television, I can push one button so that my tilt, recline, and leg position all go to a preassigned point. In fact, I have four memory positions, and I can change them anytime I like. Big improvement. 
  • Bluetooth for computer and phone: As it gets more difficult for me to control devices like my laptop computer and my cell phone, the more important it is that I can use my wheelchair controls for that purpose. This wheelchair communicates with my computer and phone through Bluetooth. I use the joystick to manipulate the cursor just like I would use a mouse, and I have right and left click buttons that mimic mouse buttons.
  •  IR for A/V equipment: I use voice controls for some of my audio/video controls, but not everything, and sometimes voice control is not ideal. Now I can control all of my A/V equipment using my wheelchair. 
  • Electronic anterior and posterior tilt: This means I can tilt my seat, as opposed to my seatback, forward or backward. Again, this helps with activities like brushing my teeth and eating messy foods, as well as getting several comfortable, reclined positions. I also make use of a certain anterior tilt memorized position whenever I empty my bladder during the day. I'm practically standing up and peeing again. 
  • Cell phone plug-in: In my previous chair, I had a cell phone mount, but in this chair, the cell phone is plugged into the wheelchair battery, and I never worry about charging. Imagine if you had a cell phone you never had to charge. 
  • 7.5 mph: My old chair topped out at 5 mph. This one goes 50% faster. That makes a huge difference in the wide open spaces like parking lots and my jaunt to physical therapy twice a week. 
  • Standing mode: This is what makes the Permobil F5 VS the Cadillac of the power wheelchair world (I guess that’s a pretty outdated term for high quality, isn’t it?). My iBOT elevates me up on two wheels. My Invacare could elevate me 8 inches. My new chair elevates me, but if I prefer, it also stands me up. I put a padded bar just below my knees and another one across my chest, push a button, and I am standing. It’s a good position to be in for so many activities, but most importantly, by standing a little bit each day, I improve my health—circulation, respiration, digestion, joint health. Standing brings a whole new benefit to physical therapy. Doing my exercises in a standing position allows so much more range of motion. 

What I wish it had

I wish I could move along at normal walking speed at full elevate. I understand not allowing normal walking speed, about 3.5 mph, in standing mode, but I think they could allow it in elevate mode. I’m working on them. They’re not budging, yet.

Final Thoughts

In my yet unpublished book, on page 169, I write: 
There is no relationship between human and machine more intimate than that between a wheelchair and its user. The chair serves not only the function of legs, but also couch, recliner, dining room chair, car seat, chaise lounge, dog walker, coat rack, drink holder, getaway vehicle, and shopping cart. It is, therefore, ironic that the customary term for such a condition is confined to a wheelchair, when, in fact, the more accurate term is enabled by a wheelchair
Now, knowing what I do, I need a few items to this list. I’ll never finish the damn book.

Thanks go to my occupational therapists, Michele and Maren, my physical therapist, Claudia, my primary care physician, Dr. Freedman, the folks at Black Bear Medical including Don and Wendy, and the team at Permobil led by the incomparable Lisa. Couldn’t have done it without you.

Tuesday, April 18, 2017

The Art of Peeing in Bed (on Purpose)

As significantly disabled people go, I am the exception. My bladder still works. To take advantage of that, however, requires ingenuity.

During the day, I pee into little containers and empty them into the nearest toilet. Straightforward stuff. But liquids have this unfortunate tendency to flow downhill, and that presents a challenge when I’m lying down in bed.

When it became too difficult for me to sit up in bed and use a container, much like I do in my wheelchair, the difficulties began. For a few years, I had the strength and dexterity to roll over on my side. Once I’m on my side, there’s room for the container, and everything flows downhill. Piece of cake.

As my disease progressed, it became too difficult for me to roll myself over, so I had to wake Kim to assist me. Not straightforward. Not a piece of cake. This interrupted Kim’s sleep, one or two times per night, and it was an imperfect process. She had to roll me over and stick a pillow behind me before I rolled back. Our success rate was less than 100%.

This is where ingenuity came into play. As I searched the internet for a better device for Kim to stick behind me after rolling me over, I happened upon this inflatable pillow:

This product is typically placed between the mattress and box spring, and is used to elevate the head of someone's bed. Here is the description:
The Contour Products Mattress Genie Bed Wedge is an adjustable alternative to foam bed wedges, and an affordable alternative to hospital beds. With just the touch of a button on the hand held remote control, you can raise the head of your bed up to 26" high. When not in use, simply press "flat" and the air bladder will disappear from view, eliminating the issue of storage for a bulky foam bed wedge. 
I began to wonder. What if I turned this pillow lengthwise and laid it underneath one side of my fitted sheet? Because it inflates and deflates rapidly, could it serve the function of rolling me over in bed so I could pee in the middle of the night without Kim’s assistance?

I ordered the device, and we tried it out. It worked—spectacularly. Kim and I both sleep better. I no longer need to dehydrate myself in the evening. I had begun to fear that, although my bladder function is near-normal, I would have to resort to intrusive devices simply because liquids like to flow downhill. Now, I’ve put that thought off for a while longer.

Yes, I realize this example is more evidence of how much simpler men’s lives are than women’s, even in the disabled community.

Although I couldn’t avoid the words pee, bladder, and toilet in this blog post, I didn’t use any unpleasant words like penis, urine, urinal, catheter, or New York  Yankees. You’re welcome.

Tuesday, April 11, 2017

Disabled Cruising 2017 Part 5: All Good Things…


The last time we flew home from the Caribbean, the airline lost both of my power wheelchairs. That memory, and the knowledge that we had eight wheelchair transfers ahead of us, might have induced a certain dread for the trip home, but it didn’t. We had something working in our favor—first class seats on both flights. Did we spent more of Kim’s eBay earnings on such an indulgence? No. We had paid for coach, but for no apparent reason, they assigned us to first class.

When we have short layovers, like we did on this trip home, we always specify that both wheelchairs be checked through to our destination. But when we arrived in Philadelphia, they brought my Permobil wheelchair up to the mouth of the plane, despite my instructions to the contrary. Kim, Andy, Karen, and I explained that we didn’t have time to reassemble the Permobil, transfer me to it, disassemble it, and get it on the next plane. Per the tags on the wheelchair, it was supposed to be checked straight through to Boston.

“No problem. We’ll get your wheelchair to your next flight.”

I was satisfied. Kim was skeptical.

The airport wheelchair they brought me was rather ancient, but I knew I’d only be in it for a short time.

“Let’s remove the armrest,” I said, “so I can slide from this aisle chair into the airport wheelchair.”

Six people tried to get the armrest off, then one of the airport employees stated the obvious. “The armrests on this wheelchair are not removable.”

“Then let’s remove the leg rests,” I said, “and I’ll slide in the chair from the front.”

Six people tried to get the leg rests off, then one of the airport employees stated the obvious. “The leg rests on this wheelchair are not removable.”

Apparently, I was the first wheelchair user this airport had ever encountered. The only option became lifting me up and into the wheelchair, instead of sliding. Six people each grabbed a piece of me and made it happen. I survived.

When we reached the gate for my Boston flight, they had already begun boarding the plane. In most cases, this would have caused me some consternation, because passengers already seated in the plane would have been able to gawk at me as I boarded. They would see how the sausage is made. But I didn’t mind in this instance because I was in seat 1A. Surrounded by my team of lifters, pullers, and tuggers, nobody would get a good look at the sausage-making other than the guy in 1C.

Soon after we boarded our final leg of the trip, the flight attendants closed the door, and we were ready to go. But we didn’t go. Kim’s instincts had been right. The pilot came on the speaker system and said, “We are all ready to go but are waiting for an electric wheelchair to be loaded into the luggage compartment. Once that is done, we’ll be underway.”

At least 100 people, the front half of the plane who could see me when I boarded, knew damn well whose wheelchair was holding things up.

I expect their reactions broke down this way:

50 of those 100 passengers thought, “How awesome that somebody so disabled is still able to travel. I guess I can wait a few minutes.”

12 passengers thought, “His poor wife…”

10 thought, “Look at his wife, that lucky bastard.”

7 thought, “I can’t believe the pilot just singled him out that way. Very inconsiderate.”

Sadly, 6 passengers thought, “People like him shouldn’t be allowed to fly. He holds up everybody.”

5 thought, “I wonder why he can’t walk.”

4 thought, “How can he afford to be in first class? Must’ve got a big settlement.”

3 thought, “What if he has to pee on the flight? Or worse?”

2 passengers thought, “I wish I was paralyzed so I could quit this damn job.”

And 1 passenger probably thought to herself, “I don’t know if he has MS or something else, but I sure hope my MS never gets that bad.”

When we arrived in Boston, Andy went to get the van and Karen, Kim, and I headed to baggage claim. Everything was accounted for except the iBot. I went to the baggage office to inquire. The gentleman in front of me was ripping the person behind the desk a new one.

He said, “I am appalled that you would treat a first-class passenger this way.”

You poor thing.

The other attendant quickly found my iBot, and we were on our way.

So ended another wonderful vacation. I’m grateful that I have the resources to travel this way. And I’m thankful for the help of my brothers, my sisters-in-law, and most of all, my amazing wife. We had so much fun that we’re going on another cruise this summer.

Maybe I’ll blog about it.

To start at the beginning, Disabled Cruising 2017 Part One, click here.

Tuesday, April 4, 2017

Disabled Cruising 2017 Part 4: On the Ship

For this vacation, we decided to use Kim's eBay earnings to see how the other side lives. We booked a wheelchair accessible suite, which is of course larger than a normal suite, which is larger than a normal cabin.  Certain perks came with the suite package too, such as a butler (who we shared with ten other suites), unlimited internet, premium drink package, private cocktail bar and dining room, champagne upon arrival, preferred seating at the theater, and a bunch of other, mostly minor, stuff.

I’m reminded of the movie Titanic, where the first class and steerage passengers were kept separated. Like Rose’s fiancĂ© in the movie, I knew I would have to remain diligent to keep Kim from sneaking out of our cabin to go below decks and party with the real people. I think I succeeded, but there was that one night when I didn’t hear any snoring from the other side of the bed…

The Ship 


I find large, modern cruise ships to be more accessible than even the nicest hotels. This ship, Celebrity’s Silhouette, did not disappoint. The cabin was spacious and wheelchair friendly, especially the bathroom. When I pushed my key card into the slot, the door to our cabin not only unlocked, but it opened for me. And the public spaces shined. Almost every door I encountered opened and closed for me automatically. The entrance to every public bathroom was equipped with a pushbutton, as was the entrance to the accessible stall within. Few ramps were required because few elevation changes existed. And elevators? There were banks and banks of them.

Outstanding food options are included in every cruise package, but they try to get you with high-end restaurants that require you to pay a premium. With our suite package, we had access to a couple of these without an extra fee. I remember on our first cruise seven years ago, we ate in the main dining room every night, and we considered the quality of the food and the service to be five-star. By dining at the same table every night, we were waited on by the same service folks and sat with the same dining companions. We learned a little bit about the staff and our companions, and they learned a little about us. By day two, our favorite drinks were awaiting us when we arrived. On this cruise, however, we ate at a different restaurant almost every night. Again, the food and service were outstanding, but we did miss out on that classic cruise experience of the main dining room.

Kim and I like to gamble. I play the blackjack tables, and she plays video poker. We frequented the ship’s casino, as did my brother Andy. I came in second place in the blackjack tournament, but that pot wasn’t enough to offset my losses for the week. Kim didn’t make out so well either, but we met a lot of people and had fun.

Each evening we rendezvoused with the rest of our gang on the appropriate deck to have a drink and watch the sunset. Here are a few photos.






The iBot


Although almost nine years old now, the iBot still impresses. My other chair, a Permobil, does more tricks than the iBot, and it is better suited for everyday use, but nothing turns heads like the iBot’s balance mode or stairclimbing mode. In my Permobil wheelchair, people treated me politely if they noticed me in all. In my iBot, I was a rock star. I encountered a problem, however, which was a first for me with the iBot. In balance mode, the chair is quite good about adjusting to various inclines, but it has no ability to adjust for elevation differences in the opposite axis, sidehill situations. Here’s what I mean.

One day Andy rented a cabana on the top deck of the cruise ship. One of the unique features of the ship, or this class of ship within Celebrity, is the real grass lawn areas on the top deck. The first time I approached our cabana, I didn’t realize that a curb crept up on the sidewalk. When I hit the angled curb in balance mode with just one of my tires, see picture below, I thought I was screwed. But the iBot quickly diagnosed the fact that I was about to tip over, and it dropped me from balance mode into four-wheel-drive mode so quickly that I didn't tip over at all. As everyone does when they stumble, the first thing I did was look around to see if anyone had seen me, and they hadn’t. Still, I confessed my story as we sat in the cabana and sipped on tropical drinks.

One evening, as we were hanging out at a nightclub, a gentleman approached me when I was in balance mode.

“How long have you been in your iBOT?”

“Almost nine years. I got one of the last ones made.”

“We’re making an iBOT 2.0, you know.”

“You work for DEKA?”

“Yes I do.”

“Hey, I’m the guy on the landing page of your website…”

We had a nice conversation on all things iBot, and he is excited about the next generation product, although he couldn’t provide me with many details.

I’m going to miss my iBot when it finally reaches the end of its life.

One more post about the cruise!

For part three, click here.
For part five, click here.