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.

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 fiancé 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.