Thursday, May 27, 2010

My MS Story Chapter 38 – Searching for a Cure

When you are diagnosed with MS, you learn that it’s a chronic, debilitating disease without a known cause or cure. That's bad enough. But when you are diagnosed with Primary Progressive MS (PPMS), as about 10% of us are, you're also told that your disability will likely be worse in the long run, and that there are no treatments which will even slow down the disease, like there are with the more common Relapsing Remitting MS (RRMS).

When I received my diagnosis I turned to the internet to search for treatment ideas. Maybe there was something out there that might work for me, even if it was not FDA approved for PPMS. Maybe there was something overseas. Perhaps there was an experimental treatment of some sort.  I imagined there might be a vast conspiracy to hide the true cure, and all I needed to do was expose it. Well, maybe not.  But there had to be something, somewhere.

Through this quest that I’ve been on for nine years, I’ve learned more than I ever wanted to about doctors, hospitals, medicine, and what makes it all go ‘round. In addition to my MS research, I’ve also learned so much from the experiences of my aging parents.

images1 A number of years ago my father was diagnosed with lung cancer. He doubted the diagnosis, so his more educated and supposedly more sophisticated sons brought him to see another doctor for a second opinion- diagnosis confirmed. At the conclusion of the surgery to remove part of one of his lungs the surgeon came to the waiting room to tell us the good news that my father didn’t have lung cancer after all- major surgery on an elderly man for nothing. I was shocked. I had no idea that two competent doctors could both make this sort of mistake. I wasn’t angry or disappointed with those doctors. I simply needed to adjust my expectations about the capabilities of modern medical science. 

In 2008 my aging and quadriplegic mother went into the hospital with overall weakness and disorientation. While the doctors scratched their heads about what was causing this condition, my mother contracted pneumonia and died. I harbor no resentment toward the doctors. They did their best, but this was simply more evidence that for all the amazing medical advances we enjoy, people still die of rather straightforward causes. Again, I needed to re-calibrate my expectations of our medical system.

Then there was PPMS, which was different from my parents’ situations because nobody even pretended to know what to do about my disease. My neurologist was the first to admit that he had no weapons with which to fight it, but that he would support me as I scoured the earth for ideas.

imagesCACR4N0J My neurologist accurately predicted that I would have an aggressive course of MS. At the time of my diagnosis a cancer drug called Novantrone was in clinical trials for PPMS. It seemed like a radical course of treatment for somebody who had only a slight limp and some general leg weakness, but we did it nonetheless.  This move set the tone for the aggressive approach that we have embraced, even to this day.

To read about my Novantrone experience click here and here

After Novantrone, we tried a host of other treatments, none of which helped me, let alone cured my MS.

Eventually I enrolled in a clinical trial for a drug called Rituxan. The trial seemed to slow my progression for the first year, but then lost its effectiveness afterward. To read about this trial experience click here.

The media is all abuzz about stem cells, both because of their exciting possibilities and because of the ethics controversy surrounding embryonic stem cells. In 2009 I learned of a clinic in Israel which was, and still is, treating MS patients with adult stem cells (as opposed to embryonic stem cells). The cells are removed from the patient’s own bone marrow, processed over a period of weeks, and then reinjected into the patient’s spinal fluid and blood stream.

I ran this concept by my neurologist, who did a little investigating for me. The clinic was indeed legitimate. However, the likelihood of success would be anybody’s guess. I spoke with a patient who had received stem cells at the Israeli clinic and had improved immensely. I began to inch closer toward signing up for the treatment. The biggest obstacle was the $40,000 price tag.

While I was trying to round up the money for the Israeli treatment I learned about CCSVI. I was never completely comfortable with the stem cell concept. I had not heard a coherent explanation of the mechanism by which this particular stem cell treatment could help or cure my MS. It would have been a huge leap of faith, based only on anecdotal success stories. That wasn't the case with CCSVI. I couldn't predict if it would work or not, but at least it made sense to me.

MS patients worldwide are insisting that governments and MS charities fund continuing CCSVI research. Some patients, like me, decided that they could not wait the 5 to 10 years it would take to fully vet this idea, and underwent experimental CCSVI treatment procedures. I had no better alternative, and due to continued disease progression, patience was not an option either.  It’s still too early for me to assess the effectiveness of the treatment I underwent in March of 2010. 

For an accounting of my CCSVI treatment experience, click here.

Although my quest has not yet resulted in a “cure” for my MS (unless the CCSVI procedure works), I have still benefited from the experience. I now understand how vital it is that patients become informed, vocal advocates for themselves. This is true when the diagnosis is simple and the treatment options are straightforward, but it is even more crucial when the diagnosis and treatment options are complex, as they are with me. 

If you only passively listen to what is explained to you during a short conversation with your hurried doctor, you are missing an opportunity.  These appointments should be a conversation, not a lecture.  Be prepared for your appointments. Ask questions (write them down so that you don’t forget). Conduct research on your own. Dare to challenge your doctors. Become an engaged, informed patient, and you will improve your chances of a successful outcome. As long as you are respectful, and as long as your doctor is not a complete jerk, your self-advocacy will be well received. And if your doctor is a jerk, then find a different one.   

If you are uncomfortable approaching your doctor in this way, then bring along a friend or relative who isn’t. 

Despite the fact that my quest for a cure has so far come up empty, I still hold physicians in high esteem. For the most part, they represent the best in human virtues: intelligence, empathy, and work ethic.  But this is your life, not theirs. Take control of your own medical care.

Thursday, May 20, 2010

My MS Story Chapter 37 – Long Term Disability

social security benefits
(Photo credit: SalFalko)
“Hard work never killed anybody, but why take a chance?”
  - Edgar Bergen

May 23rd, 2010 will be my one year anniversary.

I met with my doctor in December of 2008. “Don't you think you should consider going on disability?” he asked, not for the first time.

“No. Not yet. I’m still doing fine,” I responded, not for the first time.

But I wasn’t doing fine. My MS was growing steadily worse. I had fought the good fight to remain employed, but maybe my working days were coming to an end. In fact, maybe I was continuing to work for the wrong reasons.

Our personal lives (who we are) are so wrapped up in our careers (what we do) that sometimes it is difficult to separate our personal identity from our professional one. If I was no longer a manager in an engineering firm, then who would I be? MS had already stolen so much; could I let it steal this part of me too? Would a disability retirement benefit me because I could focus on my health, or would staying home from work be the beginning of the end? Would I be giving up on more than just my career?

It came down to what was in the best interests of my physical health. My psyche would just have to adjust. I couldn't let pride get in the way of doing the right thing.

It was time. I remember calling Kim from the road to tell her the moment I had reached this decision. Of course, she and I had discussed it many times, and of course, she was supportive.

When making life decisions like this I am very deliberate- considering all the facts, the advantages, and the disadvantages. But once I make a decision, I proceed quickly, and I don’t look back. In fact, I can’t think of any major decisions that I’ve spent significant time second guessing (although I’ve made my share of mistakes, sort of like the one on the left).

Once the choice was made, I needed to inform certain people. I worried about how this news would be received. As it turned out, my fears were unwarranted.  My close friends and family were, to a person, supportive. The most common sentiment was ‘this is long overdue’. No second-guessing. No judgment. No emotional pity.

My employer was also supportive. I was clear with them that I had researched this course of action, and I was ready to proceed. My boss and the human resources department were understanding and helpful.

I began to fill out the mounds of paperwork for the long term disability insurance benefit from my employer and for Social Security disability. I had heard many horror stories about the disability application process -- how most people are denied on their first application and need to go through an appeals process. But the first official step in this entire course of action, the step that set all the wheels in motion, was to one day, all of a sudden, just stop working. There is no other way to begin the process.

When you are hit by a bus, you know that you can’t go to work the next day. When you have a massive heart attack, you don’t wonder if you should be at work instead of in the ICU. But when you have a progressive disease, it’s unclear which day is the day that you can no longer work. Is it next month, next year? Was it last year? Is it today?

I decided that the day I could no longer work was about two weeks out. I spent that time with my employer to tie up loose ends. I still had trouble shaking the idea that I was somehow giving up. Intellectually, I knew this was the right thing to do. Medically, my doctor assured me that this was the right thing to do. Legally, I was in good shape.

imagesCAJS6E6Y Fortunately, when making decisions I give a lot of credence to my intellectual side. I had mixed feelings about this move, but I proceeded anyway. On my last day at the office my coworkers threw a party for me in the form of a roast. Kim had provided them with some incriminating material and photos. We all laughed and laughed. What a memorable sendoff it was.

Since I came home on May 23, 2009, I have not worked another day, and likely never will.

In the weeks after I stopped working there was good news and bad news. The good news was that my Social Security and private insurance applications were quickly approved, with little additional scrutiny. The bad news was that my Social Security and private insurance applications were quickly approved, with little additional scrutiny. I mean, these two organizations didn’t even put up a fight about paying me significant money for the next 20 years. Was I that bad off? I guess I was.

Since May 23rd, how have things gone for me? Who have I become, if I’m not working-Mitch anymore? I’m still trying to figure that out (really, who isn’t), but I’m doing OK. My disease has continued to progress, at least up to the point of my CCSVI procedure in March of 2010, and maybe even since then. I can’t tell.

But I’ve adjusted to being disabled-Mitch. As it turns out, life goes on after work. I still have an identity, sometimes a rather complex one, even though it does not consist of a profession, and I'm okay with that. I suppose I could sit around all day and worry about what MS might take from me next, but that wouldn’t do me any good.

I think I’ll just enjoy each day for the gift it is, thank you.
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Friday, May 14, 2010

My Disabled Cruise Story - Chapter 6 – Home is Where You Hang Your Swim Trunks

IMG_1820 After four consecutive days of visiting magnificent ports of call, we were looking forward to a full day at sea, just us and our faithful ship (and the other 3,800 passengers and 1,400 crew). Kim had been eyeing that rock climbing wall all week, and conquered it on Saturday.

By the end of any vacation week, I’m always ready to go home. I come to miss my simple life with all its little routines, all the familiar people, and all my own “stuff.” But this vacation was different.  I didn’t want it to end. 

Saturday was difficult because we were saying goodbye to all the friends we met, all the wonderful staff who had taken such great care of us, and the incredible ship itself. We were also saying goodbye to cruise Kim and Mitch. We liked cruise Kim and Mitch. They were such a cool, happy couple.

There was a party atmosphere on the Freedom of the Seas that Saturday night, and we joined in. We were determined to squeeze every ounce out of our dream vacation.

IMG_1832 that’s Cuba just over the horizon, honest

IMG_1878 farewell stage show

IMG_1880 last dinner – world’s best waitress Marianna

For the first time that week, we arranged for a wake-up call the next morning. We needed to be ready to leave the ship by 7:30 a.m. on Sunday, according to the cruise schedule. We contemplated hiding somewhere on the ship, so we could be stowaways on the next cruise, but we feared that my iBOT might give us away.

We enjoyed one last buffet breakfast on Sunday, and then departed the ship on time. At the baggage claim area in the terminal we loaded up the manual wheelchair with our bags and headed out for the buses that were waiting to transport us to the Orlando airport. We had plenty of time. Our flight wasn't leaving until 3:30 in the afternoon. Weeks earlier I had prepaid for our transportation from the ship dock to the airport, and I had let them know that my bus would need to be wheelchair accessible. I was told that it would not be a problem.

IMG_1883last buffet breakfast

This is when things started to break down. Nothing much went right on our journey home, but I was unbothered by all of it. For months I had worried that something would go wrong on the trip to the ship. A bad trip from the ship back home was of little concern to me. But that's exactly what we got -- a bad trip home.

The first problem was that the person in charge of the buses didn't have my name on their list. I convinced him that this was an error. Second, since they didn’t expect me in the first place they definitely had not taken my wheelchair into consideration. Eventually they found an accessible bus, and sat us on it for a couple of hours before filling it with other passengers.

About an hour into that two hour wait, I had to empty my bladder. The wheelchair space was mid-bus, and the bathroom was in the rear. I stood up and held on the seat tops and the overhead bins. Kim moved one of my legs at a time until I reached the bathroom. When I came out of the bathroom I plopped down in the nearest seat, and just stayed there until we arrived in Orlando. We then did the dance down the aisle again to get me back to my wheelchair (after everyone else had already departed the bus).

We arrived at the Orlando airport in plenty of time for lunch, and checked in three hours ahead of our flight, or so we thought. There were thunderstorms in Chicago, so our departure was delayed from 3:30 to 5:30. Kim worried that we would miss our connection in Chicago, but I’ve travelled enough to know that if incoming flights are delayed due to weather, then outgoing flights are almost certainly delayed at least that same amount.

When we landed in Chicago we found out that our connecting flight had indeed been delayed by two hours. Therefore, we would still have the planned layover, but we’d leave O’Hare at 9:30 p.m. instead of 7:30. 9:30 came and went- so did 10:30 and 11:30. Finally, wheels were up at about 12:30 a.m. local time. No problem. The 7 hours we spent in O’Hare helped us shed that nagging feeling that we didn’t really want to go home. After all those travel delays, we couldn’t wait to go home.

The flight from Chicago to Maine was uneventful. As usual, my iBOT made the round trip without a scratch or dent. We pulled out of the Portland Jetport (not a mere airport, mind you) in our own mini-van and headed for home at 3:30 in the morning- long day.

For Kim and I, this vacation was everything that we hoped it would be. In fact, I'm cutting up my previous Visa rewards credit card (there are not that many items at Cabela’s that I can take advantage of anymore), and we now buy everything with our Royal Caribbean credit card. We'll get free stuff on our next cruise. Yes, we're hoping there will be a next cruise.

This was an ideal vacation for a wheelchair user. The accessibility on these large, modern cruise ships is as good as it gets. The ports of call leave something to be desired regarding accessibility, but if you have modest expectations then you are not disappointed. It is my understanding that the Eastern Caribbean islands have better wheelchair accessibility than the Western Caribbean islands, where we went. But that itinerary just wasn't available to us on the ship we wanted, on the week we wanted. Maybe our next cruise will be to the Eastern Caribbean.

I'd like to recommend two resources that worked well for me. First, Candy Harrington's books on travel for wheelchair users and slow walkers are fantastic. She also maintains a blog for more current information.

I used a travel agency out of Kansas City which specializes in cruises for disabled passengers. Jeanie was very helpful and a joy to work with. She responded promptly to all of my questions, and guided me through the entire process. Working with someone who understands your unique needs is invaluable. They can be reached at: Snail’s Pace Special Travel Services

If anyone has any questions for me about cruising in general or more specifically about cruising in a wheelchair, I’ll be glad to tell you what I know. Just click on the email button on the top right-hand corner of this blog page.

I hope you've enjoyed reading about and seeing the pictures of our dream vacation. I encourage everyone to do what they can to stop and smell the roses once in a while, no matter how difficult your journey. I know that a Caribbean cruise is not practical or even possible for everyone, but almost anyone can find some way to relax and enjoy themselves. No doubt you deserve it.

IMG_1799 cutting loose in Cozumel

Monday, May 10, 2010

My Disabled Cruise Story - Chapter 5 - You CAN Drink the Water in Mexico

IMG_1728 On Friday, the mind games began.

Sometimes it’s like there are two people inside of me. No, I’m not schizophrenic. On one level I was still having the time of my life, and I needed to concentrate on enjoying the day ahead in Cozumel, Mexico. On another level I was starting to feel a creeping dread that this vacation would soon be over. Despite this dark cloud on the horizon, I did manage to stay in the moment and thoroughly enjoy the remainder of the cruise.

As I did in Jamaica, I prearranged for a wheelchair taxi tour of the island. The deal was $175 for 4 hours. We departed the ship and ran the gauntlet of vendors on our way to the taxi stand. Per the plan, our taxi driver was waiting for us holding a placard with my name on it- already much better than the situation in Jamaica.

The van appeared modern and in good shape. The driver opened up the rear doors exposing a nice power lift. I positioned myself on the lift, and the driver raised me up. When we got to the top I noticed that there was neither a lowered floor nor a raised roof in the van. Damn, vertical space would be at a premium. As I inched forward the top of my iBOT seat hit the top of the van door opening. Progress stopped.

My wife and I have encountered so many access obstacles over the years that we’ve become proficient and creative at solving them. I wish I had pictures of the time we drove the iBOT onto a dock at my brother’s lake cottage using two planks over the water. Probably we could have solved this taxi challenge as well, but our hearts weren’t in it. My wife’s reluctance was based on her opinion that $175 was too much money to spend. For me, I feared that I would not be able to sit up straight during the 4 hour tour. So, even though our driver urged us to try to squeeze into the van, we played dumb. I apologized to the driver, who barely understood any English, and asked him to lower me back to the pavement.

The walk into town from the pier was 2.5 miles, and we decided to go for it despite the Mexican heat. The stroll was neither scary nor particularly interesting. The sidewalk quality was below Grand Cayman standards, but still passable for me in four wheel drive mode. By the time we reached downtown we were hot, tired, hungry, and thirsty. A gentleman beckoned us into his restaurant with the promise of air conditioning. It worked (both the beckoning and the air conditioning).

IMG_1735 walk into town

IMG_1752 drunkstore bar

After relaxing and refilling our tanks in this authentic, quaint, affordable Mexican restaurant, we were ready to take on Cozumel.

We wandered the clean and safe streets. Although the vendors were vocal, they didn’t bother us. I don't know if they were less aggressive than the Jamaicans, or if we were we simply getting used to that game. Throughout the city, the Spanish speaking vendors had a common English phrase for, I assume, all wheelchair users: “free parking inside”…”free parking over here”…”come on in, free parking.” Ugh. It was only funny the first dozen times.

IMG_1757 downtown Cozumel

IMG_1761 downtown Cozumel

IMG_1765 back up just a little more…

IMG_1790 bars with clowns, what an idea!

I had managed to avoid using the bathrooms in Haiti, Jamaica, and Grand Cayman- just good timing. But because we took advantage of the beer and margaritas in Cozumel, there was no avoiding it. They say not to drink the water in Mexico. I say the water is OK, just don’t use the bathrooms, well at least the handicapped accessible ones. They were not clean, and they didn’t always have grab bars. The stalls were just a little bigger than the standard ones.

But other than that we had a great time in Cozumel. The food, drink, and souvenirs were plentiful and inexpensive. Eventually, we had to return to the ship. But there was no way that we wanted to make that 2.5 mile trek back to the pier in the afternoon heat. We found a taxi driver and asked him to call us a handicapped accessible taxi. It seemed that the ratio of cabs to tourists was about 2 to 1, and there were three large cruise ships in port that day. Tough way to make a living.

IMG_1780 Besides the bathrooms, the other third world-ish aspect of Cozumel was the occasional soldier or group of soldiers toting automatic weapons on the streets.  I just don’t see that very much in Portland, Maine. There is a serious war in Mexico these days between the government and the drug lords, and even the tourist towns are not exempt from it.

When the wheelchair taxi arrived, because we were highly motivated, we found a way to squeeze me and the iBOT into the back of the van for the short ride to the pier. I had asked another tourist earlier in the day what the cost of the taxi ride from the ship to downtown was. The answer- $7. But because this was a special handicapped van, he charged me $14. That kind of discrimination is just something you just don’t experience in America. I took it in stride though.

Unfortunately, I repeated a mistake from earlier in the cruise. I was having so much fun in Cozumel that I had not been careful, and had overheated, although not as badly as in Haiti. I rested in our stateroom with a cold cloth on my forehead for an hour or so, and then I was good to go.

That night we enjoyed dinner with Pablo and Melissa, went to a production show in the ship’s massive theater, and partied a bit more. I lost $100 of my $112 blackjack winnings (of course).

I hope I don’t come across as too critical of Cozumel. I liked the island, and we had more fun there than any other port-of-call that week. The best word to describe Cozumel- festive.

One more here

IMG_1812 view of Cozumel from our ship

Friday, May 7, 2010

My Disabled Cruise Story - Chapter 4 - Civilization in Paradise

IMG_1666 “Oh CRAP!”

These words, or some slightly more profane, were the first I uttered on Thursday morning of my cruise, as our ship was approaching George Town, Grand Cayman (photo from our balcony on right).

I had owned the iBOT for almost two years. Every single night during that time, without fail, I had remembered to plug it in to charge the batteries…but not on Wednesday night.

Disaster, right? Well, if it had to happen, then that was perhaps the best day for it. Kim was going on a snorkeling excursion without me on Grand Cayman anyway, and I was going to be on my own during that time. I certainly didn’t need all day to explore George Town.

While Kim went ashore, I plugged in the iBOT for a few hours and watched a movie on my laptop. I agree that The Hurt Locker is an important movie, but I question whether it was the best movie of the year.  Maybe I feel this way because I was slightly distracted while watching it, itching to be out in this Caribbean paradise rather than sitting in my room, or perhaps I feel this way because I was absolutely blown away by Avatar in IMAX 3D.  But I digress. 

This was the only port of call on our cruise where Freedom of the Seas didn’t tie up to a dock. I had been worried about this a bit, even though I’d been reassured by my travel agent and others. It turned out to be a non-issue. Small tender boats (100 or so people at a time) loaded passengers constantly, and after a 5 minute boat ride, deposited them on shore. I was worried about transfers from the cruise ship to the tender and from the tender to shore. But both went very smoothly. I accomplished the journey from ship to shore by myself with zero drama. I make it a point to maintain a personal drama-free zone around myself at all times anyway. 

IMG_1671 view of our ship from the tender

IMG_1673 nice ramp from tender to shore

What a stark contrast there is between Ocho Rios, Jamaica and George Town, Grand Cayman, two exotic Caribbean islands that we visited on consecutive days during the cruise. If Grand Cayman in some ways resembles me- understated, safe, organized, and predictable- then Jamaica resembles Robin Williams back when he was on coke- outrageous, improvisational, and unpredictable. Both island personalities hold a certain charm though.  I’m not here to judge. 

George Town is modern. The streets are clean; the sidewalks and buildings are generally accessible, probably better than the average American city. I saw only a few street vendors, and they were not obnoxious. Many employees of the stores looked and sounded like, well, Americans. This was an oasis of normalcy after Jamaica.

IMG_1674 example of sidewalk ramp in George Town

The geography of Grand Cayman is different than that of Haiti and Jamaica. The latter are large islands with mountains and jungles. Grand Cayman is a small, flat island. I bet there is nowhere to hide outside in a hurricane.

IMG_1688 7 mile beach, Grand Cayman

Given its modern appearance, I set out to score some internet access for a reasonable fee, so that I could get caught up on my emails. As I wandered around the clean, safe, accessible streets I happened upon the Cayman Islands Public Library. Inside, there was a bank of computers where I spent an hour catching up, for free. Afterward I explored the shops for a while, and then headed back to the ship.

Kim had an outstanding snorkeling experience, including close encounters with stingrays. 

IMG_1675d back rub, anyone?

IMG_1675e kissing a ray!

 IMG_1675g learning to hold a ray

IMG_1675h this is nuts!

IMG_1680looking up at our ship from tender

IMG_1681two other cruise ships in port that day

At about 3:00, back on the ship, I couldn’t wait for Kim any longer, so I dove headfirst into the lunch buffet. At 3:30, just as I had finished my feast, Kim returned from her excursion and declared that she was starving. Being the gentleman that I am, I didn’t make her dine alone. I told her I’d have a “little something” with her. I’m not sure how it happened, but I had a complete second lunch. That’s how we rolled on the ship- eat till you drop, take a short breather, eat some more. It takes profound effort and concentration. I was equal to the task.

We enjoyed a wonderful sunset off the bow of our westbound ship. See the photos.




Thursday night was our second and final formal dinner. One of the dining choices was a lobster tail and shrimp plate. Kim ordered two, because she could. I was intrigued by the dessert sampler, so I ordered two of them, because I could. I know what you’re wondering, and here’s the answer. Kim, with all her walking and other activities, and a freakishly high resting metabolic rate, gained only one pound during the cruise. I gained seven. Frankly though, I was relieved. I had feared double digits.




Last stop- Cozumel, Mexico…click here

Tuesday, May 4, 2010

My Disabled Cruise Story - Chapter 3 - Jamaica Enchants Us

I don't know how to best describe Ocho Rios, Jamaica, our second port of call. Clearly, Jamaica is not a manufactured little town like Labadee, Haiti is. It’s authentic, yet enchanted (or should I say bewitched?). I took this video from our stateroom balcony as we approached the island.

I had connected with a Jamaican taxi driver on the internet a couple of weeks earlier. He seemed legitimate. For $150 he would drive Kim and I around the island in his wheelchair accessible van for about four hours. We were to meet him at 9:45 at the cruise ship dock. We showed up a little early, about 9:15. There was a no-nonsense lady who appeared to be in charge of the taxis. She asked me if I wanted one. “No,” I said, and I gave her the name of my contact. She'd never heard of him. That was when things began to get weird.

There was a gentleman taxi driver nearby who had a wheelchair accessible van. The lady in charge motioned for him. I guess we were an obvious match. He came over and asked me if I needed a wheelchair taxi. I said, “No thanks. I’ve already made arrangements with someone else.” I'd seen a picture of my contact, and he was about 30 years younger than this guy.

He cleverly asked me, "What’s the name of the guy you are waiting for?"

I told him.

"Oh, I work with him. I spoke with him last night and he told me to pick you up today. Didn't he tell you?"

"Oh, no, he didn't tell me," I said, becoming confused (or bewitched).

"And the deal was?" he asked.

"150 dollars for four hours," I responded automatically.

Things were happening so fast. Little did I know that I should have answered $100, or maybe even $75, because I later realized that this guy was not connected with my internet guy at all.

"Right,” he said while accepting my greenbacks. “Follow me.”

We obeyed.

The vehicle was in decent shape. However, I noticed that there was another couple already seated in the large van. As the driver was opening up the rear door and setting up a ramp for me to get in I whispered to the other couple, "How much is he charging you?"

"I don't know for sure. About $100," they responded. Apparently, they were no better prepared for this situation than we were.

I said, "You shouldn't pay him anything. I was supposed to have this van to myself for $150. We can split the cost.”

But it all happened so fast. This driver was very good at what he did- negotiating or casting spells, I’m not sure which. He sucked $150 out of the other couple, and then we were on our way.

Remember in Chapter 1 of this cruise story, I indicated that a wedding party had boarded the ship just before the cripples had. Guess what? The couple in the van with us was the newlyweds -- Pablo and Melissa. They're very nice people, and we spent a lot of time with them on the cruise after surviving Jamaica with them.

The driver quickly assumed the classic Jamaican tour guide persona and put us at ease (ya mon). We all agreed that we didn’t want him to take us to all the normal tourist spots. We wanted him to show us the real Jamaica. We were asking to go “off the grid.” What were we thinking?

In Jamaica they drive on the left side of the road, and in my humble opinion they drive like maniacs. But this guy was an old hand, and didn't kill us. We met all sorts of strange Jamaican characters that day, all of whom knew our driver by name.

IMG_1531 strange Jamaican character

 IMG_1521 Ready Freddy

IMG_1545 local herb garden

IMG_1552 our ship from a vista above Ocho Rios

We stopped and got out of the van at a couple of locations- to look at the scenery or to shop. At most of these locations, if I had not been in my iBOT wheelchair with four-wheel drive mode, it would've been very difficult for me to get around. So I rate the island of Jamaica fairly low in terms of wheelchair accessibility. But we didn't get off the ship and wander around that part of town, so to be fair I can't speak specifically to the accessibility of the downtown area in Ocho Rios.

Naturally, the Jamaicans were amazed by my wheelchair, especially in balance mode. At one point Kim was helping me up a high sidewalk curb by using the stair climbing mode. A vendor came up to me and reached out to help. That could really have screwed up the operation, so I abruptly put him off, and he was a bit offended. But when he saw how well the iBOT managed that curb, he nodded and smiled.

The vendors in Jamaica are aggressive. They swarm all over you and behave in what we Americans consider a bold and brash manner. They don't make physical contact, so you don’t feel unsafe in that way, but it's not a pleasant experience. After a time you either tune them out or their routine begins to eat away at you and ruin your mood. You don't leisurely look over their wares and ask them questions. The vendors beg and plead and cajole you, including the drug dealers.

Eventually we were dropped off at a small beach with a little restaurant nearby. We had authentic Jamaican jerk chicken and the local Red Stripe beer for a reasonable price, and wandered around the beach for a while. But it was very hot, and after about three hours of braving this exotic island, even though we considered ourselves the adventurous sort, all four of us were ready to return to the familiarity of our cruise ship. We summoned the taxi driver, and he asked where we wanted to go next. He seemed disappointed, even though he had already been paid, when we said that we were done. I may have played the disability card. I can’t remember for sure.

IMG_1567 Pablo and Melissa

IMG_1569 near the beach

IMG_1572 Ocho Rios from the top deck of our ship

Such an esoteric culture…such a mysterious island. I suspect that if I ever visit there again, I'll stay “on the grid.” Jamaica would be a less scary place if experienced from the sterile, canned tours. But in retrospect, I’m glad we saw Jamaica the way we did. I’ll never forget that day.

To be continued…click here

Saturday, May 1, 2010

My Disabled Cruise Story - Chapter 2 - First Port of Call

IMG_1489I’ve been asked several times what my favorite part of the cruise was. I can’t decide. Here are some candidates:
  • breathtaking scenery
  • clear, blue water under puffy white clouds and equally blue skies
  • people-watching (the beautiful ones, of course, but also the interesting ones)
  • bar hopping without driving or going out in the weather
  • great food, in abundance
  • being pampered
  • free ice cream
  • blackjack
  • great theater-style entertainment
  • a guy playing the guitar and singing any song you know
  • a different guy playing the piano and singing any song you know
  • the architecture, decorations, and furnishings onboard
  • meeting new people (both crew and passengers)
  • a different, exotic port of call each day, but need to unpack only once
  • knowing that my wife is having as good or maybe even a better time than I am
IMG_1410 I had all this at my fingertips on the ship, without needing to bother with my handicapped van or a jacket, hat, or mittens even once. It was just so easy, available, and accessible. This was one of those rare vacations that I didn’t feel like I needed another vacation to recover from the first one.

I remember that when I was at the rehab hospital being qualified as an iBOT owner, I told the therapist that I doubted I would spend much time in balance mode. I was afraid it would freak people out when they saw a 220 pound man elevated to normal height zipping toward them on two wheels. I suspect I was right about the freaking out part, but I was definitely wrong when I assumed that I wouldn't use balance mode often. I choose balance mode every chance I can when I’m out in public. I love it. I've become an iBOT exhibitionist.

I spoke to Independence Technology, the manufacturer of the iBOT, about a minor maintenance issue a few weeks ago. While making small talk, I mentioned that I would be going on a cruise soon. About 10 minutes after I hung up the phone, the representative from Independence Technology called me back.

IMG_1685She said, "Since you indicated that you are going on a cruise I am obligated to inform you that you absolutely CANNOT use the balance mode on the cruise ship. The ship's swaying will cause a malfunction in the gyroscopes that control the iBOT in this mode."

I responded, "Duly noted. However, I must tell you that I've done a lot of things in the iBOT that you've told me not to do, and I’m going to try out balance mode on the ship as well."

She was pleasant- just doing her job.

I attract a lot of attention at the shopping mall, downtown, or at the grocery store when I'm up in balance mode. But, for whatever reason, the level of attention was two or even threefold during the cruise. People stared shamelessly at me. They came up to me and posed questions. They asked my permission to take photographs of me. They asked where they could buy an iBOT for grandma (they can’t). They spoke in hushed tones to one another about me and my wheelchair as if I couldn't hear them. I loved it.

For Kim, in addition to the wonderful items I listed in the opening, there were all sorts of athletic activities that she could take part in both on the ship and at the ports of call. On Tuesday morning, as the ship was docking at Labadee, Haiti, Kim decided to try out the surf simulator on the cruise ship. She chose to use a boogie board. Below is the video.

At about 10 a.m. on Tuesday we walked down the dock from the ship to the Royal Caribbean resort in Labadee, Haiti. Labadee is a manufactured little town- a la Disney. You don't get to see the real Haiti at all, but that’s probably a good thing.  Below is a video we took from the ship.

The front half of Labadee was perfectly accessible, with concrete sidewalks. However, toward the back of the resort I had to follow a sometimes hilly dirt road. For many wheelchairs, both manual and power, this would have been problematic. Of course, it was no problem for the iBOT in four wheel drive mode.

Kim tried parasailing in Labadee, and loved it. While she was flying around over the cool, blue waters, I explored the resort. Just a month earlier I had undergone experimental MS surgery for a condition called CCSVI. Many people who have had this procedure reported an almost immediate improvement in one very common MS symptom – heat intolerance. Haiti was about 90° and very humid that day. I was able to confirm, with certainty, that my heat intolerance has not improved one bit.

The left side of my body has always preceded the right side in terms of progression. What happens (or more appropriately, what no longer happens) on my left side today will be echoed by my right side six months or a year later. But what about my left side? Does it have a preview of what is to come? It does, in the form of heat sensitivity. The way that my body feels when my core temperature is elevated is actually a window as to how I’ll feel at normal body temperatures about a year later. Does this make sense? If not I’ll be happy to provide a table, chart, or spreadsheet with more detail.

Because my right hand is less disabled than my left hand, I have the iBOT set up so that I control the joystick with my left hand, leaving my right hand free for, well, everything else. However, due to the uncomfortably hot weather, and the fact that I had already used my left hand on the joystick a lot that day, as we were heading back to the ship my left hand became too fatigued to operate the joystick. I had to reach over with my right hand for a while to give my left hand a rest.

When we got back to our cabin it was clear that I had overdone it that day in terms of exposure to the heat. Kim got me a cold washcloth to put on my face and I lay down on the bed for a couple of hours. By the time we went to dinner, however, I was fully recovered (I still had MS though).

IMG_1493 Dinner was, of course, wonderful. After dinner we went to the top deck and enjoyed views of the northern coastline of Haiti as we cruised west towards Jamaica. Later that evening I won $112 on blackjack. Any guesses on whether I held on to those winnings all week?

Oh, and the iBOT balance mode worked flawlessly the entire week. Apparently, iBOTs don’t get seasick after all.

To be continued…click here

IMG_1414 Piano bar guy

IMG_1416 parade on the royal promenade

IMG_1422 main dining room

IMG_1846 favorite pub onboard