My Disabled Cruise Story - Chapter 4 - Civilization in Paradise

“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. 

view of our ship from the tender

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.

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.

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. 

back rub, anyone?

kissing a ray!

  learning to hold a ray

this is nuts!

looking up at our ship from tender

two 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

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.

strange Jamaican character

  Ready Freddy

local herb garden

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.

Pablo and Melissa

near the beach

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

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

I’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

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.

She 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).

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

Piano bar guy

parade on the royal promenade

main dining room

favorite pub onboard

My Disabled Cruise Story - Chapter 1 - Herding Cripples is Easier than Herding Cats

Like so many family-oriented couples, Kim and I found ourselves approaching the empty nest stage of our lives having never enjoyed a romantic vacation without the kids. A cruise holiday had always been on our bucket list, but we never even had a serious discussion about embarking on one.

One morning this past winter I realized that I was having more difficulty transferring from my bed to my wheelchair. At that moment I had an epiphany. What was I waiting for?  I wasn’t going to get any better- only worse. I would never be more capable of enjoying a vacation than I was right then. Later that same day I presented my case to Kim. I was either very persuasive, or it was simply an inspired idea, because she instantly embraced the concept of us going on a cruise (or the third possibility is that she always wanted to go on one, but her New England frugality kept those feelings properly suppressed).

We spent a couple of weeks exploring our options. Much of the research involved finding a cruise line, a cruise ship, and ports of call that were more handicapped accessible than average. I referred to my friend Candy Harrington’s book 101 Accessible Vacations for some guidance. Since this was our first cruise experience, we worked through a disability travel agency, Snail’s Pace Special Travel Services. Eventually we booked the Royal Caribbean cruise line, Freedom of the Seas ship, and a Western Caribbean itinerary- with an April 18^th scheduled departure.  Below is a map of our cruise route. 



Royal Caribbean offers wheelchair accessible rooms that are about 1.5 times larger than standard staterooms (for the same price). This leaves ample space for maneuvering a wheelchair. Just as importantly, the bathroom is extra roomy, and laden with grab bars. Because this was a once-in-a-lifetime vacation for us, we splurged for a room with a balcony (accessible). The public areas in these ships are highly accessible too. All the public restrooms have pushbutton door openers for both the outside door and the handicapped stall door. Most of the other public doors are also automatic. These are rare accessibility features for even the most progressive buildings on shore. 

we pushed these beds together

roomy cabin

accessible shower

accessible toilet

accessible balcony and accessible glass of beer

Kim and I shared the planning duties. I made packing lists and spreadsheets. That’s what I do- bring order to chaos. I dealt with the travel agent and the cruise line. Kim researched activities on the ship and at the ports, to plan our entertainment and sightseeing. She joined Facebook cruising groups to learn more about this type of vacationing. We both did a lot of shopping for “cruise clothes.”

So why am I writing about this experience? Is this the what it is like for a disabled person to cruise post? Is it the cruising with MS post, or is it the taking my iBOT on a Caribbean cruise post? Really, it's not written from any one of these perspectives. I’m just sharing with you what this adventure was like for Kim and me, given our unique challenges. Take from it what you will. No matter your reason for reading, hopefully you will find this post to be amusing, informative, or maybe it is just boring enough for you to read when counting sheep has failed.

The first leg of the journey was the flight from Portland, Maine to Orlando, Florida. One of the big packing decisions we had to make was whether or not to burden ourselves with my manual wheelchair. I've owned this chair for over a year, but I've probably spent a grand total of 30 minutes sitting in it. I really love the iBOT, and I don't enjoy the manual wheelchair at all. Yet, it seemed like an unacceptable risk to embark on this dream vacation without any backup mobility device, just in case there was some sort of problem with the iBOT. There was never any consideration given to going on this trip without my iBOT. So, reluctantly, we packed up the manual wheelchair and the stuff that goes with it, our three big bags, our two carry-ons, and headed to the airport. As we were unloading our gear from the minivan at the Portland airport it became immediately apparent to us that the manual wheelchair was no burden at all, but rather a very useful luggage cart. Who knew?



I had not flown in a year, but nothing had changed for me. I still drove my iBOT to the mouth of the plane and then transferred to what is called an “aisle chair” or a “straight back chair.” I took the computer controller and the foot rests off the iBOT and folded the seatback down. This essentially put the iBOT in what I call “armadillo mode.” I instructed the baggage handler on how to set and release the brake on the iBOT so he could push the chair around easily. Two strapping men got me down the aisle in the aisle chair and I transfer to my seat. Standard stuff.

airplane aisle chair

iBOT standard mode

iBOT armadillo mode

On the trip to Orlando we had a short layover at Reagan International Airport, so I arranged for my iBOT to go directly from one plane to the other, just like all the other luggage. I was transferred from gate to gate in one of those ultra-flattering airport wheelchairs.

When we arrived in Orlando my iBOT was brought up to the mouth of the plane. I transferred from the aisle chair to the iBOT, reassembled it, and it started up just fine -- the same as the other dozen or so times I've flown with it. Kim and I went to baggage claim and picked up our bags and our cart/wheelchair and went to the taxi stand. We found a wheelchair taxi without too much difficulty and were transported to our hotel just a couple of miles from the airport. We spent the night there and then on Sunday morning our prearranged wheelchair van took us from Orlando to Port Canaveral, Florida, where the Freedom of the Seas and our dream vacation awaited us.

before boarding

view of ship from beach later in cruise

After being issued our boarding documents we were told to hang out in a special section of the waiting area. I soon realized that I was being herded together with all the other cripples (no offense…none taken). We watched as a wedding party boarded the ship, and then the cripples went next. What a fine looking parade we were- wheelchairs, scooters, walkers, canes, too old, too fat, bearded lady, sword swallower, you name it.  But I didn’t feel conspicuous. These are my peeps now.

And so began our cruise vacation- flawlessly. But what challenges awaited us on the high seas (cue ominous music here)?

To be continued…click here

My MS Story Chapter 34- Tell Me About the Bathroom

Life is like a movie-since there aren't any commercial breaks, you have to get up and go to the bathroom in the middle of it.
Garry Trudeau

A select few of us have legs that don’t work but a bladder that still does. I assume that we constitute a minority of wheelchair users in that way (although not so uncommon in the MS world). Because I have this versatile wheelchair that climbs curbs and stairs, the limiting factor of where I can go and how long I can stay is often bathroom access. My friends appreciate the incredible mobility that I have with my iBOT wheelchair, and often encourage me with phrases like, “Oh, you can get in there with your wheelchair, no problem.” But they don’t think about the bathroom. I, on the other hand, spend considerable time thinking about, wondering about, and strategizing about bathrooms.

New, public buildings are not the problem- airports, hospitals, shopping malls. The ones that make life interesting for me are the old buildings and the private homes.

Our favorite pub in downtown Portland is called Ri Ra. Up until a year or so ago, I could still manage to use bathrooms that required me to get up out of my scooter or wheelchair, struggle through a bathroom door, and use the toilet. When I could no longer do that, Ri Ra just wasn’t working for me anymore. Too bad, because it’s a fun spot to meet friends after work and a welcoming space to bring out-of-town guests for a cold brew.

So, as I’m driven to do by necessity sometimes, I became creative. There is a nice hotel directly across the (busy) street from Ri Ra. Now, anytime I’m enjoying my favorite pub and need to use the toilet, I put on my coat and gloves (if it is winter) and cross the street to the hotel. I carry myself as if I’m a guest while I zip by the check-in desk. Sometimes I even help myself to one of their complimentary chocolate chip cookies. They greet me with a “good evening sir,” or similar. I go around the corner to the lobby bathroom, use it, and then leave again. I can't tell if the folks behind the desk are naïve or compassionate.  Who's fooling whom anyway? 

John and Ann are good friends. Kim and I often visit their home to watch a Red Sox or Patriots game together. They have three steps up from their garage to their entryway, but this is no problem for the iBOT. Their first-story bathroom is accessed from a narrow hallway. I just can't quite make the corner into that bathroom. Until a few months ago I could manage to get out of my chair and slither on over to the toilet, but no more. So once again, I became creative.

The tightest turning radius in my iBOT wheelchair is actually in the balance mode. So at John and Ann’s house I now go into balance mode in the hallway, make my way into the bathroom, go back down into standard mode, transfer to the toilet, transfer back to the wheelchair, go back up into balance mode, exit the bathroom, and then go back down into standard mode. Piece of cake. It sounds like a lot of hoops to jump through in order to use the bathroom, but as a disabled person you either learn the patience required for these types of work-around plans, or you sit home all day.

Here's another problem I encounter sometimes -- low toilets. I visited some friends in Boston recently. Their condo was quite roomy. I could even get into the bathroom without going up into balance mode. The problem was, once I got situated on their low-rise toilet, it became very difficult to get back up. The vanity was to my right, so I had something to use as leverage for that half of my body.  There was nothing, however, to support the left side of my body.  I found myself stuck on their toilet for about ten minutes. I was on the verge having to call for help, something that personal vanity discourages. But, at the last minute I executed a successful, all-or-nothing lunge for my chair.

When I had my CCSVI procedure in Brooklyn in March, we met friends at a Manhattan restaurant for dinner. Kim and I arrived at the restaurant before the other six guests. After a rush hour drive from Brooklyn to Manhattan, I needed to empty my bladder. Unfortunately, the restaurant bathroom was inaccessible. I asked the maitre d’ if there was a handicapped bathroom anywhere nearby, and there wasn’t. Kim and I surveyed the situation in the restaurant bathroom a second time, and devised a strategy. Long story short- I held myself up by grabbing whatever I could (doorknob, countertop, Kim's shoulder) and Kim moved my feet for me one at a time, the 10 steps or so from the door to the toilet and back again. I nearly ended up sprawled on the floor a couple of times, but Kim propped me up (and I only outweigh her by 80 lbs). I refrained from drinking anything with dinner, as I didn’t want to wrestle with that bathroom again.

Last summer I was speaking with a friend of mine about my bathroom accessibility issues. She asked the question, "Why don't you just use a catheter and a bag?" One day I may have to do that, I explained to her, but as long as my bladder is still working I feel obligated to use it. So, for the foreseeable future, I'll continue to make the following request whenever we consider going someplace for the first time:

"Tell me about the bathroom."

CCSVI- Diagnosis and Treatment Log Entry #8- My Final Thoughts

(Photo credit: Wikipedia)

The world is a tragedy to those who feel, but a comedy to those who think.  - Horace Walpole

My journey through CCSVI self-education, diagnosis, and treatment has been one of the most remarkable experiences of my life, whether or not I ever see any benefit from it.

So with all that I have learned and all that I have now experienced, what is my position on the CCSVI – MS connection? From a purely scientific point of view, nothing is yet proven. We have pilot studies. We have anecdotal evidence. We have well thought out theories. We have incredible enthusiasm among patients and some doctors. We have trials in progress (not enough, mind you). We simply don’t have irrefutable, scientific proof of the nature of the connection yet, especially for the relatively rare primary progressive MS (my type).

I do have a scientific background, and that part of me will not be satisfied until much more data is independently collected and analyzed. But I am also an MS patient and an MS advocate. This side of me does not demand the same burden of proof as my scientific side does. The good news is that I don’t have to choose a single perspective. I can honor them both.

I am personally convinced that to some extent CCSVI contributes to or even causes MS, although I can’t prove it. I don't know how robust that relationship is, but I feel that there is something profound going on here. Again, I am less informed and therefore less confident about the relationship between CCSVI and primary progressive MS than I am about the relationship between CCSVI and the more common relapsing remitting MS.

Given this, what do I believe should happen next? I'm glad you asked.

I believe that every person on the planet with clinically definite multiple sclerosis should be tested for CCSVI. Unfortunately, I'm not exactly sure what I mean by “tested.”  Relying on the run-of-the-mill MRV and ultrasound examinations isn't the answer. There are only a few clinics in the world that are proficient at using these noninvasive tests to diagnose CCSVI. That is not a reason to stop using these tests, but rather a reason to become better at using them- through practice. The gold standard is the catheter venogram, and even that needs to be performed by an interventional radiologist who has some level of competency or at least genuine interest in CCSVI. Every MS patient deserves to know if the veins that drain their central nervous system are functioning properly, and they deserve to know that now.

I believe that every MS patient on the planet who shows evidence of CCSVI should be entitled to have it treated by a method agreed upon by patient and doctor. This might include stents, angioplasty, open surgery, etc.

I believe that CCSVI is the most promising area of research into the root cause of multiple sclerosis, and should be funded accordingly. I’m not (yet) calling for all other research into causes and treatments to stop, but our emphasis should be on CCSVI. Today, the percentage of MS research dollars allocated to CCSVI is grossly disproportionate to its potential benefit.

Given this, what is my commitment to the CCSVI cause? I’m glad you asked.

I personally commit to furthering the cause of CCSVI education and research. One of the ways I will do this is through CCSVI Alliance. They will be launching their website at http://www.ccsvi.org/ soon. I'll also continue to advocate for CCSVI research and education through this blog. I'll promise to speak about CCSVI with every MS patient or professional who will listen to me. I will commit to share my images, data, and personal experiences about my CCSVI diagnosis and treatment with anyone, anywhere, any time.

I need to thank a few people for helping me along the journey that culminated in my treatment for CCSVI on March 17, 2010:

• Dr. Sclafani, Holly Barr, and the rest of the team at King’s County Hospital Center for taking up the cause of diagnosing and treating MS patients who have CCSVI, and for taking such great care of me while I was a patient there.

• Drs. Zamboni, Schelling, Simka, Dake, Haacke and Zivadinov for advancing the cause.

• So many other doctors around the world who, although less well known than those listed above, are also studying CCSVI, and performing diagnosis and treatment of patients.

• My primary care physician, my neurologist, and their teams including Judy and Rebecca, all of whom supported me.

• Patients and patient advocates like Jeff and Joan Beal, Marie, Sharon, and others who become true leaders in the CCSVI/MS cause.

• My personal MS friends who I have spent countless hours discussing this with, including: Marc, Neen, Cheryl, Barbara, Kimberly, Lew, Al and so many others, and especially the group of MS patients who took the initiative to recruit Dr. Sclafani to the CCSVI cause.

• My two fierce angels, who befriended me and then introduced me to Dr. Sclafani- Michelle and Randi. Both have hearts of gold, but as a matter of both gratitude and self preservation I’m going to do my best to never get on their bad sides.

• My father, my two brothers and their wives, my two wonderful children, Kim’s parents, and all my other friends and relatives who have given me so much support, not only during my CCSVI adventure, but for the past 8½ years that I’ve battled this disease.

• My late mother, for all she taught me about living a disabled life with grace and dignity.

• And most of all, Kim. Words cannot express how grateful I am that I share my life with you.   

Because it may be a long while before I know if this CCSVI treatment helped my disease progression or not, I’m unsure of how to comport myself. Should I carry on as if I’m cured or as if I’m still sick?

That’s a trick question. Forgive me. The answer is the same no matter the outcome of my CCSVI treatment. To the best of my ability I'm going to live my life one day at a time, hope for the best, prepare for the worst, and treat each day as if it could be my last. I encourage each of you to do the same.

To see all of my CCSVI Diagnosis and Treatment Log Entries, click here.


Postscript: I apologize for the barrage of clichés at the end. Sometimes you just can’t improve upon time-tested wisdom. Regarding the future of this blog, I have no plans for it to become the CCSVI Channel (we are launching CCSVI.org for that purpose). CCSVI will certainly be one of my more common topics here, but I will make an effort to re-broaden my perspective to include more general topics about living a disabled life. For example, check back in late April to read about, and see some pictures of, what it is like to go on a Caribbean cruise in the iBOT wheelchair. Hint: although I will derive satisfaction from blogging about the cruise, just maybe that’s not the only reason I am going on it.