My Remote Life

I can’t just say to Kim, “Pass me the remote.” That could be any of almost twenty devices that I work with. Everyone has a lot of remotes, but I rely on them a little bit more than the average person.

I spend all my time in one of two places – my computer station in the living room or my bed in the, you guessed it, bedroom. Let’s start in the bedroom.

• We have a television remote which we rarely use. (item 1, below)
• Kim and I each have a DirecTV supplied universal remote that operates our TV and receiver. (items 2 and 3)
• I have a remote on a lanyard that operates my overhead, Sure Hands lift system. (item 4)
• I have a wired remote that operates my Power Bob bed. (item 5)

In the living room I have a few more remotes.

• One of the people who lives in my house is pretty good with electrical gadgets. The ceiling light in the living room, the overhead light at my desk, and the lights in the dining room are all operated with small remotes. (items A, B, and C, respectively)
• The gas heating stove that we just installed a few weeks ago is operated by a remote. (item D)
• The shades in the living room are each operated with their own remote. (items E and F)

And finally, I have a Logitech Harmony Smart Control universal remote that operates my audiovisual equipment. (Item Z). It replaces all the other remotes shown in the picture below.

I’ve preprogrammed the Harmony remote for single button control of the four most common modes that I use:

• Watching television fed by DirecTV, audio through Sony sound bar
• Watching television fed by Chromecast device, audio through Sony sound bar
• Watching television fed by Bluetooth player, audio through Sony sound bar
• Listening to music through the Sony sound bar, fed by any number of Bluetooth MP3 players that we have

I also have a Harmony app on my iPhone, which provides all of the same functions.

Here’s a short video, which I narrate, that demonstrates how my Power Bob bed, my Sure Hands overhead lift system, my gas heating stove, and my living room shades operate with their remote controls. If you're reading this post as an email, click here to watch the video.

I know I’m not the most remotely connected person. Some people start their automobiles or adjust the temperature in the houses from anywhere in the world. I know wheelchair users who have a device built into their chair so they can control many household items in the same way they control their wheelchair.

I operate each of these remote controls with my right hand. My left hand is fairly useless. I worry about the day when my right hand becomes as useless as my left. That’s when things will have to get really high-tech.

Las Vegas Trip 2014-2015, Part Five, Conclusion

Because the flight to Vegas had been so uncomfortable, I dreaded the trip home. But the things I was worried about went fine, and something I would have never guessed could go wrong did.

While waiting in the Las Vegas airport for our flight home on Friday morning, I heard, “Now boarding flight blah blah blah, service to Philadelphia. First class passengers may board at this time.”

“What the hell? She’s boarding the plane without me!” I said to Gate Agent A.

“She should not be doing that,” Agent A said. Then she yelled, “Gate Agent B, stop boarding that plane!”

I had no business telling Gate Agent B what to do or not to do, but I reflexively yelled, “Yah, Agent B, stop boarding that plane!”

Everyone in the gate area looked up.

The reason I was so fired up was because I take great pains to prevent this from happening. One time I was forgotten, and I ended up being the last person to board a plane with all the other passengers already in their seats. I only did that once, years ago, and I vowed never to let it happen again. Everybody doesn't need to see how the sausage is made.

I always introduce myself to the gate agents well before boarding time. I want to review some of the logistics with them. “I’ll need an aisle chair and help boarding,” I explain, even though they should already know this because I discussed it with the ticketing agent. I will also remind them, “I want my iBot wheelchair brought up to me at the end of this flight,” and so on. And of course, I introduce myself to ensure that I'm on their radar for pre-boarding, and they don’t start the process without me. How fucked up would that be?

After we yelled at Gate Agent B in front of all the passengers, she stood in a daze, unsure how to proceed. As I approached her with my boarding pass extended she decided to regain control of the situation, and said, “Well, I need to finish boarding first-class and then I'll let you on.”

As I mentioned, I was fired up. Speaking as firmly as I could without shouting, I corrected her. “No. You don’t. I board before first-class.”

She must have noticed my steely determination, and maybe she remembered her training. After a glance at Gate Agent A for confirmation, she relented and simply said, “Okay.”

Half of the first-class passengers had already boarded, but the other half were left standing at the gate entrance with their privileged boarding passes dangling impotently from their hands. I paid no attention to them and scooted down the jetway. However, when the rest of my team began to follow me through the boarding door, Kim noticed several of the jilted first-class passengers were fuming, maybe not about my boarding but about my entourage joining me.

Kim calmly turned to them and said, “Believe me, you want us to go ahead of you and help my husband. It takes a lot of work, and it will go much quicker for everyone this way.” She didn’t wait for a response, but followed me down the jetway. The boarding proceeded uneventfully. In fact, after this fiasco the entire trip home went much better than expected.

For the first time since I've been unable to walk, I emptied my bladder on a plane. This flight wasn’t completely full, so we were able to have the person ticketed for the window seat in our row reassigned to an empty seat elsewhere, lending us some privacy. I decided not to deprive myself of fluids that morning, because I wanted to try to use a portable urinal, discreetly, in mid-flight. It worked. Kim draped my coat over my lap during the procedure, and no one was the wiser. Going forward, I'll be more at ease knowing that this is an option.

Because we had a tail wind, the flight from Las Vegas to Philadelphia was two hours quicker then the outgoing flight had been – a huge improvement. Also, I purchased Wi-Fi access for the return flights ($23 for 24 hours). Having my mind engaged on my iPad kept me from obsessing about the pain in my butt. I also figured out that by taking my shoes off I had some slight ability to move my feet around, and that helped. And finally, each time we executed an airline transfer, we became better at it. Kim and I weren't battered and bruised when we got home like we were when we arrived in Vegas. We discussed this afterward and softened our “no more flying” stance.

When we landed in Portland, both of my wheelchairs made it, unlike the previous flights back to Portland on US Air in 2013. I guess I will not enjoy a perpetuity of losing wheelchairs and gaining compensatory flights for the rest of my life. I’m okay with that.

In the days after we got home, an old ailment resurfaced, but with Kim, not me. The condition is called Mal de Debarquement Syndrome, and Kim first experienced it after our Caribbean cruise in 2011. She had no seasickness during the cruise, but for months afterward she suffered episodes where she felt like she was still on the ocean, even though she was firmly planted on land. Eventually, the symptoms dissipated. However, now that this syndrome has been introduced to her system, she feels the same way when she gets off an airplane as she did when she got off the cruise.

So we have a couple things to think about when we consider flying again.

I don’t want to leave the impression that this trip was a disaster, or that we regret going to Las Vegas for Kim’s fiftieth birthday. There is no city more wheelchair accessible than Vegas. The accommodations were unexpectedly nice – both the hotel and the medical equipment I rented. The company was outstanding – my brothers, their wives, and David and Stephanie. We enjoyed the dinners and the show and the fireworks and the fancy drinks and the gambling. Las Vegas is simply an amazing place to spend time. Oh, and the people watching…it doesn’t get any better than in Vegas.

And finally, I want to give a heartfelt thanks to Andy and Karen, and Tom and Diane for all the help they lent us on this trip. And of course, my biggest thanks go to my lovely wife, Kim, who continues to amaze me, and everyone else, with her ability to manage my considerable needs while maintaining a positive, even cheerful, disposition.

And I'll say this one last time… Happy fiftieth birthday Kim!

Click here for part four

 Andy and Karen

Tom and Diane 

Dave and Stephanie at midnight

Las Vegas Trip 2014-2015, Part Four

Just before midnight on New Year’s Eve, we walked outside onto the Vegas strip to take in the fireworks show. I braced myself for the unusually cold weather they were experiencing, but it didn’t feel so bad. I guess the camaraderie of hundreds of thousands of revelers warmed the atmosphere.

My childhood best friend, Dave, who has lived in Vegas since shortly after we graduated from college, and his significant other, Stephanie, joined us, so we became a group of eight. The Las Vegas strip was closed to vehicle traffic, and oodles of temporary police officers were unleashed on the masses. They made a determined effort to manage us, to enforce where the crowd could and couldn’t stand, but it was a fruitless endeavor – herding cats. At first we were obedient, out of habit I suppose. But as midnight drew near, everyone maneuvered for the best viewing positions, and the admonitions from the rent-a-cops became just so much background noise.

We positioned ourselves in front of the Bellagio Hotel, and just prior to midnight they fired up their amazing fountain show, shooting water hundreds of feet up into the sky, in sync with the Beatles tune Hey Jude.

The fireworks show was spectacular, as expected. There was an ebb and flow to the program, and when the intensity of the explosions increased, the collective roar the crowd indicated our approval.

Watch the birds eye video of the fireworks display, below, or click here.

Andy and Karen went home a day earlier than the rest of us (which we knew ahead of time) because they both had to work on Friday. When they went out to the taxi stand at 4:30 AM, there was a long line and no taxis. Most of the taxi drivers had exhausted themselves and gone home. Andy ended up paying a limousine driver $100 for a ride to the airport, instead of the usual $20 taxi fee.

Thursday was a lazy day for us. Tom and Diane and Kim and I took in a show – The Blue Man Group – which was tons of fun. We met up with David and Stephanie again for dinner. Stephanie brought her son Quintin and two of his friends, and I amazed them with my iBot wheelchair. After dinner we gambled for the last time. Kim likes video poker, and she got to play a lot of hands on this trip, and only lost about $100. Me? I like blackjack.

Blackjack is a game with relatively favorable odds if you know how to play it, and I think I do. When I’m in my iBot wheelchair I can raise myself up to the height of the blackjack table, but because the iBot tilts me back in that mode, I can’t reach my chips easily. Andy also likes to play blackjack, so when we played together he would place my bets for me. But on Thursday I was on my own, and so I asked each dealer to help me out. They had no problem doing that. Once, I sat down beside a friendly gentleman from Sweden, and he placed my bets for me.

No matter how the bets were made, I had good luck on this trip. My goal isn’t to make money when I gamble. My goal is to play lots of hands – in other words, lose my money slowly. For this reason, I almost always place the minimum bet allowed, which was usually $15. I accomplished my goal of playing long hours of blackjack, and I managed to net a profit of $500. Now that I have this game figured out, maybe I should become a regular at the blackjack tables nearer home.

Or not.

For me, one of the most uplifting aspects of going on vacation is the positive attention that I draw because of the iBot. In my regular wheelchair, I would be almost invisible. In the iBot, in balance mode, I am an attraction. So many people approach me to voice their amazement or to ask me questions, most commonly, “How do you do that?” Even more people, and I only know this because my travel companions tell me so, stare with mouths agape after I pass by. A few act the same way in front of me, in plain view. When I’m in the iBot, I’m not regarded with pity but with admiration, almost envy.

Because of this attention, I understand what it feels like to be a celebrity out in public. The buzz I create is not like that of an A-list sex symbol – George Clooney or Brad Pitt. I’m definitely not a bad boy like Charlie Sheen or Bobby Brown. I don’t think I’m looked at in the same way as a comedian like Jerry Seinfeld or Ricky Gervais. I probably get the same attention as someone who used to be a superstar, but is now less well-known, although still beloved. Someone humble, friendly, and approachable. I’ve got it. When I’m in the iBot in a huge casino, I garner about as much attention as Meg Ryan would if she were to walk through the same casino. In the iBot, I’m Meg Ryan.

Click here for part five, the conclusion
Click here for part three

Las Vegas Trip 2014-2015, Part Three

By the time we checked in at the hotel it was about 5:00 PM local time, which felt like 8:00 to us, after a night where Kim and I each slept about two hours. But we got our second wind. This was Kim’s fiftieth birthday after all, and we were finally in Vegas, so there was no wimping out.

The six of us wandered around the hotel/casino, had a couple of drinks, gambled a little bit, and dined at one of Las Vegas’s many high-end steakhouses – fifty dollars plus per steak and additional money for side dishes. We had a refrigerator in our room, so Kim boxed up our leftover and Tom’s leftover steaks. I scoffed at her. Who wants to nibble on cold, day-old steak?

Shortly before midnight we finally gave up and retired to our hotel room. We took one look at the rather complicated Hoyer lift and decided to manually transfer me to the hospital bed instead. We had a great night’s sleep, waking up about 8:00 AM, the transition to Pacific time complete.

That morning we tackled the lift system. At my request, it came with two different types of slings. I wanted one that we could attach and detach with minimal effort while I was lying in bed or sitting in my wheelchair. After a few minutes, we figured out how to use one of the slings in just that way, and Kim lifted me up and placed me in my wheelchair. Using the Hoyer lift was more tedious than using my overhead lift system at home but still better than no lift system at all.

It was then that I learned of the delicacy that is leftover, cold, fifty dollar steak. It’s so much better than day-old, cold pizza.

We met up with the rest of our party and made a plan for the day. We spent the late morning and early afternoon exploring the Vegas strip. At the Bellagio we saw an incredible Christmas flower display, and I introduced the group to my favorite spot in Las Vegas, the chocolate shop at the Bellagio. We enjoyed a gourmet burger restaurant in the Paris Las Vegas complex, and generally had a relaxing and fun afternoon.

The city of Las Vegas puts on a tremendous fireworks show beginning at the stroke of midnight on New Year’s Eve. The fireworks are simultaneously discharged from seven different casino rooftops. We knew that the Las Vegas strip would be an absolute mob scene on New Year’s Eve, especially around the time of the fireworks, and so we decided to seek out a private party for that evening.

In the weeks leading up to our vacation, Kim was diligent in her research about party options, and we finally decided on a club called the Château, which is part of the Paris Las Vegas casino complex, located next door to Bally’s. The nonrefundable tickets were $110 per guest. A few weeks before our trip, I ordered six of them.

We showed up at the venue, in our best New Year’s Eve attire, at 8:30. It took thirty minutes or so to work our way through the line. Once inside, we realized that this was going to be an absolute madhouse, just like outside, except we were $660 poorer for it. The reason we had chosen this venue over others was because it was supposed to feature hits from the 70s through the 00s. There were no hits, just continuous, base heavy, DJ music. There were no songs that had beginnings or ends, or even lyrics for that matter. For our $660 we were allowed free drinks from nine until midnight. We soon figured out that the Château had certain cost-saving measures in place. The venue was woefully understaffed with bartenders. It took for-ev-er to get a drink. And even then, they were watered down.

Being the old farts that we are, we worried about things like fire code and other emergency situations. The place was busting at the seams with people, increasingly drunk people. When we couldn’t stand it any longer, we extricated ourselves from the party and found a quiet bar nearby where we could sit and actually speak to one another.

When we got home I wrote a letter to the Château, airing my grievances and requesting a refund. I may have played the disability card a little bit. I don’t expect a response.

But the evening was not a total loss. We did bounce back. I’ll explain in part four, next week.

Click here for part four
Click here for part two

Las Vegas Trip 2014-2015, Part Two

On Kim’s fiftieth birthday, which would be twenty-seven hours long this year, we got up at 3:45 AM and traveled westward most of the day. This was not exactly ideal birthday fun.

I boarded our 7:00 AM flight from Portland to Philadelphia pretty much like I have for years. Just outside of the mouth of the plane I transferred from my iBot wheelchair to one of the airport’s aisle chairs –a narrow, wheeled seat that barely fits down the aisle of an airplane (depicted on right).

It was a little different this time, though, because in the past I accomplished this transfer largely on my own, by using my arms and inching from one chair to the next. This time we used a slide board while a team of people, including airport employees and Kim, Tom, and Diane, dragged me from one chair to the other. The pushing of some body parts was not precisely coordinated with the pulling of other body parts, so the transfer was harrowing and a little painful, but at least it was quick. Because an airplane-load of people was waiting for me (is always waiting for me) there was pressure on all of us to complete this process expeditiously.

I had arranged to sit in one of the few airplane seats that had an outside armrest that lifted up. I’m a big guy and unnecessarily hoisting me up over an armrest would not have been very smart. As the attendant backed me down the airplane in my aisle chair, my butt inched forward on the seat. When we were lined up adjacent to my assigned seat, someone wedged the slide board under me, and Kim got ready to push me from one seat to the other. Just then my butt began to slip forward even more, and I informed everyone, “I’m going down!”

Suddenly there were many hands grabbing many parts of me, and I was hauled up and pushed over, and then it was done. I was sitting in an airplane seat for the first time in a long while. The man with the aisle chair hurried out of the plane, and the rest of the passengers were allowed to board. Soon, we were in the air.

We reversed the boarding process in Philadelphia, still a bit rough but without any particular drama. The four of us grabbed breakfast in the terminal and then loaded me up for the flight to Las Vegas. The plane was larger, so the boarding went better. But because it was a larger plane, and the flight was full, there was a third person sitting at the window seat in our row. If this person had been the overweight type, or the old type, or one of several other types of people, they wouldn’t have been inclined to step over me to get to their seat. Fortunately, the person occupying the window seat was young and physically fit. However, as her buttocks passed within inches of my face, she couldn’t help but squeak, “Oh, this is awkward.”

I wanted to put her at ease, so I said, “This is nothing. I’ve been in much more awkward positions,” which was true.

The flight was scheduled for five hours, but ended up taking six and a half hours because of a 150 mile-per-hour headwind. I had three concerns about this long flight. How uncomfortable would the seating be? What if I had to empty my bladder? What if I had to have a bowel movement (unlikely, but possible)?

The seating situation was painful for me. I spend each day on a high tech wheelchair cushion, and there is nothing high-tech about airline seats. Also, when healthy people sit in a seat for a long period of time, they unknowingly make slight positional adjustments with their hips and their feet so that any discomfort is mitigated. But I can’t move my hips or my feet, so I was left with two choices. I could silently endure the discomfort, or I could bother Kim every ten minutes or so to help me make adjustments. I did a little of both, but mostly the latter.

Kim and I had enjoyed little sleep the night before and had hoped to at least doze on this long flight. Because of my discomfort, that wasn’t possible.

I had restricted fluid intake all day, so I was able to make it from Philadelphia to Las Vegas without emptying my bladder. Also, as expected, my bowels cooperated. If they hadn’t, I have no idea what I would have done.

As soon as we touched down in Las Vegas, I turned on my cell phone and called Desert Medical Equipment to tell them that I was running late. I was concerned that they would close down for the day before I got to the hotel and checked in. My contact there answered the phone and said, “Oh, don’t worry. Your hospital bed and lift are all set up and waiting for you in your room.”

There’s nothing quite like great customer service.

When our plane pulled up to the gate in Las Vegas, the young lady sitting in the window seat in our aisle couldn’t help but make the same remark as she stepped over me to exit the plane, “Oh, this is so awkward.” I get that, but saying “this is so awkward” only makes it more awkward, if anything. Whatever.

As we walked toward baggage claim in Las Vegas, Kim and I were both scraped, battered, bruised, and exhausted. We agreed that this might be our last trip on an airplane, at least our last long trip.


Click here for part three
Click here for part one

Las Vegas Trip 2014-2015, Part One

When a group of people invokes the “Let’s go to Vegas!” toast at a bar, 99% of the time the idea crumbles under its own weight by the next morning. But on this night in January of 2014, we were in the 1%.

The trip was conceived while the six of us – my two brothers, my two sisters in law, and Kim and I – imbibed at the Snow Squall just down the street from our house. We decided, then and there, to fly to Las Vegas in December of 2014 to celebrate Kim’s fiftieth birthday. Might as well stay for New Year’s Eve, too, we figured, which this year would fall on the night after her birthday (and every year, now that I think about it).

“It’s not warm in Las Vegas in the winter. It might be in the 60s, or even the 50s during the day,” I said.

Nobody was swayed by this warning. Little did we know.

As soon as we decided on the vacation, I began to have second thoughts about committing to travel so far in the future. We don’t like to line up activities more than a few months ahead, because we don’t know how my MS will progress and what abilities I might lose.

Because I knew the hotel rooms would fill up quickly for New Year’s Eve in Las Vegas, I went directly to work on our accommodations. Prices were jacked up for those dates, so in order to stay on budget we booked one of the older establishments in the middle of the strip, a casino/hotel called Bally’s – mediocre accommodations, ideal location.

By late summer I had been enjoying my new Sure Hands overhead lift system, and I didn’t want to go without some sort of lift in Las Vegas. Also, I didn’t like the idea of having to lie flat in a traditional bed. I’m spoiled by my Power Bob bed which allows me to raise my head and feet at will. So I did some research and found a medical supply company, Desert Medical Equipment, in Las Vegas that would deliver a Hoyer lift and a hospital bed, set them up in my room, and take them away after I left, all for a mere $115 per night (we stayed three nights).
 
On this vacation, Kim and I would fly to Las Vegas for free, as compensation for US Air losing both of my wheelchairs on the way home from our February, 2013 vacation in Jamaica. Andy and Karen would fly out on a similar schedule but a different airline. Tom and Diane had the exact same itinerary as we did. We appreciate it when other folks travel with us because we don’t hesitate to put them to work. By the time we flew, though, it had been almost two years between airplane trips. I’d never gone so long without flying, and I felt unsure of myself given how far my disease had progressed over that period of time.

The stage was set for a memorable vacation. We knew things would go wrong, because they always do. But we expected to have a good time nonetheless, because we always find a way.

Click here for Part Two