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 18th 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
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.
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
Wednesday, April 28, 2010
Thursday, April 22, 2010
|(Photo credit: Wikipedia)|
In February of 2009 I traveled by myself to Houston for a conference. When I arrived at the Portland airport to catch my departing flight I drove up and down the parking garage several times, looking for one of those oh-so-valuable handicapped van spots. The only one I could find was on the top floor. So I parked my wheelchair van in the open air on the roof of the parking garage, without much thought.
The business trip was fruitful, and the return flight was uneventful. However, it was one of those late arriving flights- we touched down just before midnight. This was perhaps the coldest night of the year. Heck, it may have even been one of the coldest nights of the decade. My van was parked in the open, and it was parked high in the air, just so that I could experience a little more of the cold, biting wind. I took the elevator to the top floor of the parking garage, and surveyed the situation. I was towing my checked bag on wheels with my right hand and operating the joystick on my wheelchair with my left hand. This left me one hand short for trying to open the door from the elevator lobby to the top floor of the garage.
I require so much “handicapped stuff” that I can’t manage with a carry-on bag only, like most business travelers do. There is an unspoken competition among seasoned travelers- a badge of honor. How lightly can you pack or how long of a trip can you go on without checking a bag? This was just another indignity I had to suffer on the road. I had become, and I almost shutter to say it, a “bag checker.”
I managed to get through the door from the elevator lobby after a couple tries. The cold wind took my breath away as if I had jumped into an ice bath. Here I was, in extreme weather, in the middle of the night, all by myself in my wheelchair. If I got stuck there for any reason, I wonder how long I would have lasted before freezing solid like a chunk of ice. The first challenge was to get across the icy roof of the parking garage to my van. Because of the four wheel drive mode of my iBOT, that was no problem. The next objective was getting the automatic side door to my van open, and the ramp extended. That went fairly well, despite temps well below zero, and wind chills well below that. Once I was in the van I pushed the close button on the van door. That worked. Although my van was like an ice box, I was already significantly more comfortable simply because I was protected from the wind.
I transferred from my wheelchair to the driver's seat, inserted the key, and turned it. The van did not make a comforting sound. It struggled. It protested. “You’ve got to be kidding,” it muttered under its breath. Just when I thought it would never turn over, the engine relented, and did what engines are supposed to do. What a relief. I turned the heat on high, and started the 15 minute drive for home. That was another late night, although not 3:30 late. But of course, all’s well that ends well…
Remember, I took great pride and satisfaction in my ability to travel solo for business. But after these three winter trips, I had to ask myself if I wasn't taking too many risks for the satisfaction of feeling like a fully functional traveler. “All’s well that ends well” is something you say when you’ve been lucky. It is not a strategy. These had all been close calls with no lasting negative effects. But when would my luck would run out, leaving me in trouble on the road, by myself, in god-only-knows-where?
I had been very fortunate in my travels, not just the three trips I mention here, but all of my business trips. Even though I often rented wheelchair accessible vans at my destination cities, I never had any significant automobile problems. I'd never been sick or injured while traveling in my wheelchair. Once when I was traveling in my scooter, it died on me, and I was able to get it repaired by a local technician. I never had a flat tire. I never fell down and couldn't get up. I never got struck by lightening or contracted flesh-eating bacteria. I had a good run, but how long could I expect that to last?
In addition to avoiding the traps mentioned above, I was simply having more trouble managing by myself in my hotel room under the best of conditions- unpacking, getting ready for bed, transferring to and from the bed, getting ready in the morning, etc.
If you're not disabled, you may not appreciate how very satisfying it is when you can do anything for yourself. But it's particularly satisfying when you can do something significant, like business travel. I didn't want to give that up. Being a business traveler gave me independence and a sense of normalcy. I loved it.
I had to ask myself if it still made sense to travel solo, and the answer I gave myself was no. I made my last solo trip in April of 2009, just one month before my last day of work.
Friday, April 16, 2010
|(Photo credit: Wikipedia)|
Until I stopped working last year, I was a frequent and independent wheelchair traveler. I took great pride in my ability to complete business travel assignments, often solo. I sometimes added personal visits with far away friends and relatives at the end of these jaunts. Everything was going well until the winter of 2008-2009.
In December of 2008 I was flying back to Maine from god-only-knows-where. The last leg of my journey home was a flight from Philadelphia to Portland (PWM). The Northeast was getting pummeled by one of those storms that drops ice here, snow there, and rain someplace else. When we took off from Philadelphia, things looked promising. Not long into the flight, however, the pilot announced that the Portland airport had been closed -- the runway was a sheet of ice. PWM is quite hearty. They don’t shut down unless conditions are treacherous.
The airline re-routed us to Logan Airport in Boston, to wait things out. We weren’t on the ground very long before they gave up and decided to terminate our flight in Boston. The flight attendant announced that we would be boarding a chartered bus to transport us from Logan Airport to the Portland airport. I summoned the flight attendant.
“Is this bus wheelchair accessible?" I asked.
"I'm not sure. Let me check."
After a few minutes he returned and said, "I'm afraid it's not wheelchair accessible." He then paused, as if it was my turn to speak.
“Well then, I'd like you to call me a cab. I know that Boston has lots of wheelchair accessible cabs. And I’d like the airline to pay the cab fare."
"Let me see what I can do."
It didn't take very long to get confirmation that the airline would supply me with a cab ride from Boston to Portland- a drive that takes an hour and thirty minutes with no traffic or weather issues.
After performing the intricate dance required to transfer me from my airplane seat to my iBOT wheelchair, I headed for baggage claim. There, I picked up my bag and met the taxi that the airline had summoned for me. As is so often the case, my cab driver was a recent immigrant, I think from Eastern Europe. He was a fairly talkative fellow and made good company. As we pulled away from the Boston airport, we encountered a steady rain.
The water falling out of the sky didn't turn to ice until we were about half an hour from my home. Anyone I know, including myself, would've slowed to a crawl on the icy highway, but not this cab driver. I didn't question him though. After all, he was a professional, and that would have been insulting. I may be a lot of things, but I am no insulter.
When we finally pulled in the driveway of my house I called my wife to have her move a vehicle so that I could unload directly from the cab into our warm cozy garage. I didn't want to unload onto a driveway of glare ice, with more falling from the sky. We managed that successfully, and my head hit the pillow around 3:30 a.m. That was a long day. But all’s well that ends well…
Quick side story: we slept for only an hour that night. At 4:30 a.m. an ice-laden branch broke off from an overhanging tree and came through our kitchen window, rather loudly. Broken glass was everywhere- in the sink, on the counters, all over the kitchen floor. Kim and our daughter’s boyfriend, who was sleeping on the couch, cleaned up the glass, removed the offending branch from our kitchen, and temporarily boarded up the window. What a night.
I often flew out of the Manchester airport, about 90 minutes from my house, because of better connections. In January of 2009 I attended a meeting at our corporate headquarters near Cincinnati, and flew back into Manchester on a snowy evening. The first leg of my drive home usually takes approximately 45 minutes on Route 101 from Manchester to Portsmouth. If all went well I would be home by 10:00 p.m. Everything didn’t go well.
It was snowing so hard that I couldn’t differentiate the passing lane from the driving lane on the highway. It was a challenge to just stay between the snow banks. Every few miles I’d see another car off the road. Sometimes emergency vehicles and tow trucks were already there. Other times they hadn’t arrived yet, but I didn’t stop to help. What good would I have been?
Eventually I became resigned to finding a hotel to wait this storm out. I worked my corporate-issued smart phone, Googled hotels (while driving in the snow with my hand controls) called a couple of them, and found a room in Portsmouth. Ninety minutes into what was normally a ninety minute ride, but only halfway home, I pulled into the hotel parking lot. I transferred from the driver’s seat to my iBOT, grabbed my suitcase, put the iBOT in four wheel drive mode, opened the side door to the van, lowered the ramp, and backed out into the unplowed parking lot.
I managed to make it across the parking lot and into the hotel- safe at last. The next morning I finished my 45 minute drive home in about 45 minutes. In the Northeast we are pretty good at cleaning up quickly after snowstorms. So, again, all’s well that ends well…except the winter was not over yet.
To be continued....click here
Wednesday, April 14, 2010
There was an interesting CCSVI web forum today, hosted by the National Multiple Sclerosis Society (NMSS) and the American Academy of Neurology (AAN). The panel convened at the AAN 2010 Annual Meeting in Toronto. To view a video of the forum, click here. To read a summarry of the forum, click here.
The panel consisted of:
The panel consisted of:
Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, ItalyI found the forum to be helpful at times, and condescending at other times. So, it was exactly what I expected. What did you think of it?
Dr. Robert Zivadinov, Associate Professor of Neurology, University of Buffalo, State University of NY
Dr. Andrew Common, Radiologist in Chief, St. Michaels Hospital, University of Toronto, Ontario, CA
Dr. Aaron Miller, Professor of Neurology & Director of the MS Center at Mount Sinai, NY, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society
Friday, April 9, 2010
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."
Friday, April 2, 2010
|(Photo credit: Wikipedia)|
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.
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.