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.

Tuesday, March 21, 2017

Disabled Cruising 2017 Part 3: Cozumel and Jamaica

Why do Kim and I go on elaborate, expensive vacations? Why does anyone? It can’t be that these weeklong excursions make us happy only during the time we spend away, 2% of our year. It must be that they have a lasting effect, or at least we believe them to (is there a difference?). Midway through this cruise vacation, I lamented how this is only fleeting. I can’t make it stick. I can’t make it last. In just a few short days, it will be gone, and will it have been worth it? Then I ordered another margarita, watched the sun melt into the ocean, and went back to living in the moment.

I can’t explain or justify why, in recent years, we’ve been traipsing all over the Caribbean. I’m sure it has something to do with stress reduction, mental health, living life to the fullest, etc. But for Kim and me, there may be another reason. We go on vacation because we still can, and we want to show the world that we still can, and we want to show one another that we still can. But most importantly, I think, we do it because we still enjoy it. We do it to feel alive.

I am still alive.

Cozumel, Mexico


Kim and I had been to this tourist mecca before, on our first cruise seven years earlier. We had a blast that day, but we weren’t sure that the experience would be repeatable. Back then, it was spur-of-the-moment kind of fun. So we didn’t recommend that in 2017 the six of us walk into town and randomly bounce around bars until we got drunk. Instead, we asked the concierge on the cruise for ideas. She suggested a hotel within walking distance of the pier, which might be a fun place to hang out for the day.

This time, Tom and Andy volunteered to be the advance team. They found the hotel, confirmed it was wheelchair accessible, and learned it would cost us the enormous sum of $20 per person to hang out by their pool and on their Caribbean beach for the day. Oh, did I mention that included a $12 credit toward lunch? Cozumel is so affordable and so fun.

On the walk from our ship to the hotel, we encountered various vendors. One of them kept repeating the same request to us and our fellow cruisers: “Don’t build that wall.” This is a serious issue to many people on both sides of the border, but we couldn’t help laughing about it several times during the day.

Jamaica


This was our third trip to the enchanted island of Jamaica. Our ship docked at the relatively obscure port of Falmouth. This time, Tom and Diane were the advance team. Kim had identified a highly-rated restaurant on Trip Advisor where we could get authentic Jamaican jerk chicken. Tom texted us around 8 o’clock to say that he had found the restaurant and it was wheelchair accessible.

The city of Falmouth has invested in upgrades to the cruise ship terminal. When we stepped off the ship, we were greeted by an almost Disney-like caricature of Jamaica. Modern shops, clean streets, friendly proprietors, curb cuts, accessible public bathrooms, no scary people, no police. We spent an hour or so walking around that area, then it was lunchtime.

When we left the “Green Zone” we encountered the real Jamaica. In their scouting run earlier in the day, Tom and Diane had enlisted the services of a local to guide them through the craziness to the restaurant. The same local approached the six of us as we emerged. For a handful of greenbacks, he led us through the gauntlet of vendors — clothing, memorabilia, drugs — toward the restaurant. I noticed that the seas parted ahead of him. He was a man not to be messed with, and I wondered what he must have done to earn that reputation.

Of course, I was in balance mode in my iBOT, and the natives expressed their amazement. For the first couple of blocks of our walk, there were police officers everywhere. I couldn’t decide if that was more comforting or concerning. When we got further from the port, and the police presence dwindled, I didn’t feel unsafe. The scene can be intimidating in Jamaica, but we were very much their guests, their guests with money to spend.

The restaurant was a hole in the wall. Well, actually, there was no wall. A collection of run down tables and chairs surrounded what looked like an outdoor bar. We sidled up to one table and placed six orders for Jamaican jerk chicken, and a round of RedStripe beer. The chicken was accompanied by local side dishes — rice and vegetables — with optional hot sauce. It tasted amazing.

After devouring the chicken, our guide led us back to Disney-Jamaica. We hung out at Margaritaville another hour, boarded the ship, and set sail for home.

To be continued…

For part 2, click here.


For part 4, click here.







Monday, March 13, 2017

Disabled Cruising 2017 Part 2: CocoCay

In the weeks and months leading up to an elaborate vacation, I build visual models in my mind. Before this cruise, I imagined a virtual state room, various parts of the ship, the ports of call, and more. Some of this modeling was based on research and previous experience. The rest, I probably acquired from the same image store I shop at for my nocturnal dreams:
What can I get for you today, Mr. Sturgeon?
For my upcoming cruise, I need visions of typical Jamaican city streets, and don't skimp on the olfactory sensations—need to keep it real, mon. I also need a cruise ship swimming pool, and a few hundred extras, preferably good-looking ones, but I'll take whatever you have in inventory.
And for tonight’s dreams, I need images of my father morphing into a grizzly bear and chasing me through the woods. Oh, and you might as well give me a replica of my 8th grade classroom so I can realize in the middle of my math exam that I am not wearing pants. 
That’s all?
Oh, don’t worry. I’ll be back for more.
Inevitably, when these vacations begin, my newly formed memories overwrite the models I constructed in my mind. The visions I spent so much time cultivating always disappear, except that one time I made a conscious effort to remember them, just as an experiment. The actual overwhelms the anticipated, forever erasing these abstractions from the hard drive of my mind.

I’m certain that my brain isn’t the only one that works this way. Right?

Please tell me I’m right.

First stop – CocoCay, Bahamas

At some ports of call, the cruise ship ties up to a dock, and passengers walk onto shore. This was not the case at CocoCay. Everyone going ashore had to board a tender boat, which shuttled passengers from the cruise ship to the island. I decided to use my iBot wheelchair on CocoCay, because I knew there would be a lot of sand to navigate, and the iBot is the only wheelchair I have which can operate on sand.

We had reserved a cabana on CocoCay. This would give the six of us a private spot with some shade for the day. Tom and Diane, early risers that they are, took the first tender to shore and claimed our cabana. Somehow Andy and I became separated from Kim and Karen, and we each took separate tenders. Ship personnel arranged it so that I got on the tender last and got off it first, which suited me fine. Below is a photo Tom took as my tender approached, and a zoom of the same photo. Note that Andy and I are on the open deck, and all the other passengers are stuffed into a lower or upper compartment. I liked my spot.



As soon as I disembarked from the tender and headed for the cabana, an employee intervened to inform me that power wheelchairs can’t operate on sand. I politely told him to stand aside and watch. I left my signature all over the island.


We had a wonderful day on CocoCay, and on our voyage back to the ship Andy went out of his way to again stand with me on the deck of the tender. I suggested that his gesture was 20% brotherly love and 80% personal comfort. He didn’t deny it. Traveling with me isn’t all bad.

To be continued…

For part one, click here.

For part three, click here.

More pictures from CocoCay: