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.