Thursday, August 22, 2013

Road Tripping

A big thanks to all the nice folks who sent well wishes last week for my trip up to Maine. I’m happy to report that the excursion went extraordinarily well, despite my nervousness about leaving my comfort zone and venturing forth into the wilds of territory unknown to the gimpified me and my trusty mechanical friend Legs, otherwise known as my wheelchair. In anticipation of the excursion, my vivid imagination concocted fears that proved to be not grounded in reality, and this trip made me realize that such fears are as much a symptom of my disease as my paralyzed right side.

It’s all about adapting to changes, and when dealing with a chronic, progressively disabling illness, the changes just keep coming. Nestled within the safety of my comfort zone, which encompasses not only my apartment but also the surrounding neighborhood with which I am so familiar, I can compensate incrementally as the changes come, or try my best to ignore them. When thinking about traveling beyond the boundaries that I’ve subconsciously demarcated on a map that is constantly being reworked by the troubled cartographer in my mind, I find myself consumed with unease, a barrage of “what if’s” doing their best to crowd out any notions of a carefree escape. I’m certainly aware of other disabled folks, some worse off than me, who have taken incredible journeys, but that knowledge does little to quiet the naysayers in my head.

Not that I’m some shrinking wallflower, quivering timidly in my shell. Quite the contrary, in the realm in which I’m comfortable, I am often quite outgoing. If I spot a puzzled tourist looking lost in Central Park, I don’t hesitate to roll right over to them and offer some assistance. I’m happy to meet friends old and new for a meal in one of the many restaurants on “my” NYC streets, and of course, now that I’ve slain my once percolating doubts that I might no longer be able to pull off taking photos from my wheelchair (which I wrote about here), I’ve been out and about shooting lots of photos, the best of which will eventually get posted to these pages when I finally get around to running them through Photoshop. I’m not exactly a whirling dervish of activity, though, as the disease does take its toll and demands its ritual sacrifices and burnt offerings in the form of plenty of downtime and other concessions to the fatigue, discomfort, and weakness that it likes to throw at me like Zeus hurling thunderbolts, but on whole I’ve actually had a pretty active summer.

That said, when I received a note from my dear friend Harvey inviting me up to Maine for his 50th birthday party, my initial, knee-jerk reaction was simple – no way. Harvey’s note wasn’t a straightforward invite, though, he laid out an emotional and compelling argument for me to get off my duff, which included the line “How often do we (or will we) ever get to see each other?” That “will we” really struck a chord, as getting hit with this damned creeping paralysis has really brought home the capricious nature of life, and crystallized the stone cold truth that the only thing we can really be certain of is uncertainty. I thought of two good friends who had been quite upset for me when I was originally diagnosed and had offered their continuing sympathy and support. They were both healthy when I told them of my disease, but both are now gone, one the victim of an aneurysm and the other of leukemia, while I’m still here, a circumstance none of us could have possibly foreseen when I first delivered the news of my illness.

I remembered Harvey standing up at my wedding to make a toast, glass held high. He said, “I’m adopted, and I know that family has more to do with love than blood, and Marc is family.” I knew that Harv has gone through some difficult family upheavals over the last year or so, and I thought back to the days of our youth, when the two of us laughed and loved and lived and cried con mucho gusto as we tried to carve footholds in life through a crazy quilt epic of cheap booze, raw emotion, and tantalizing hopes and dreams. We were in our early 20s back then, both fond of an obscure old 1970s movie called Hurry Up Or I’ll Be 30 (click here). The age of 30 seems very far off when you are 23 or 24, but now it’s just a speck in my rearview mirror, growing more distant with each passing second. The subject line of Harvey’s email invite read “Hurry Up or I’ll Be 50”, and if those words couldn’t light a fire under my fanny, well, I might as well have just gone ahead and gave up the ghost right there.

Additionally, I was keenly aware that Karen and I hadn’t had anything even remotely resembling a vacation in years, and God knows she deserves a trip around the world for all she’s been through the last decade. After wrestling with the pros and cons for a few minutes, I googled “wheelchair accessible van rental New York City”, and lo and behold found that such a rental was indeed possible. Renting an accessible van meant I could travel with my power wheelchair, something I’d never done before, and indeed, that was the secret to our successful trip. Traveling with my manual chair just plain sucks, since I lose all independence once I’m in it, and I now realize the tremendous role that feeling of dependence has played in my reticence to leave my little section of New York City.

Okay, enough with the endless soul-searching, or else I’ll have to change the name of this blog to Wheelchair Socrates, and that wouldn’t be any fun now, would it? So, onward ho with a little travelogue of our trip. The accessible van was dropped off to us the Tuesday night before our Wednesday departure by a very friendly and extremely helpful gentleman named Jeff, who runs the New York branch of Wheelchair Getaways (click here). Wednesday morning (well, early afternoon, since I generally do my best to avoid mornings) we packed up the van and hit the road. Jeff had removed the passenger seat in the van, so I could roll right up and sit next to Karen for the duration of the drive, playing navigator as Google maps shouted directions from my iPhone.

Our first stop was Portsmouth, New Hampshire, a picturesque seaside town just south of the border with Maine, about a four and half hour drive from NYC. We stayed in a hotel in the historic district of Portsmouth, and our accessible room was spacious and well laid out. I’d been quite anxious about the fact that there were no rooms available with stall showers, as there’s no way I could step over the side of a bathtub to take a shower. Happily, I found that the large wheelchair accessible bathroom in our hotel room
The Flying Wallendas
allowed me to me roll my chair right up to the side of the tub facing forward, where I could, with Karen’s help, get both legs over the wall of the tub and then stand up directly from my sitting position in the wheelchair (yes, I’m still able to stand, even long enough to take a shower). Getting out of the shower was just as stress-free; with a little help from Karen I was able to simply sit right back down in my chair directly from inside the bathtub. Easy peasy lemon squeezy. This setup was much less stressful than the situation at home, where our bathroom is not nearly large enough for me to drive into, so I have to leave my wheelchair in the hallway and then take an unsteady few steps to get from my chair into the bathroom, and then into our standup shower. On bad MS days, this short sojourn, which concludes with my precariously stepping over the 3 inch lip that lines the edge of the shower stall, can be as heart stopping as any daredevil act attempted by the Flying Wallendas.

Portsmouth was loads of fun, lots of good New England seafood and charming streets lined with quaint specialty shops and boutiques. We visited an open-air museum called Strawberry Banke (click here) which is comprised of about twenty late 17th and early 18th century structures, all open to the public and some staffed with reenactors. About six of the old houses were wheelchair accessible, and despite my kamikaze tendencies I managed to navigate the chair through the extremely narrow doorways and halls without destroying any centuries old buildings and/or artifacts. I’m a history buff, and Karen has a degree in Historic Preservation, so this was right up our alley.

Marc and Mitch
We spent Wednesday night and most of Thursday in Portsmouth, which wasn’t nearly enough time, but by Thursday evening we were back in the van and heading north to South Portland, Maine, where we met up with my friend Mitch and his wife Kim. Mitch writes the excellent and popular MS blog Enjoying the Ride (click here), and we’re both rabid Red Sox fans, so there is a natural simpatico between us. We had a delicious dinner at a seafood restaurant that was a scenic 20 minute walk/ride from Mitch and Kim’s lovely and extremely wheelchair accessible house, the convenience of which made me a bit jealous. Our apartment here in New York was definitely not designed with wheelchair users in mind, although through the years I’ve made it more accessible by gouging huge chunks out of the walls and door frames courtesy my slightly out of control driving habits. Needless to say, when we decide to leave the building we live in I don’t think we’ll be getting our security deposit back. Mitch and Kim were great company and gracious hosts, and after we returned to their house from dinner we blabbed away the hours until Karen and I eventually piled back in the van and drove another hour north up to Augusta, close to where Harvey lives, arriving at our hotel at about 1 AM.

Tennessee Tuxedo and Marc
Karen and I spent much of Friday afternoon at the hotel spa, where we were indulged with some therapeutic massages courtesy my buddy Harv, who surprised us by prepaying for our rubdowns. Maneuvering myself onto and around the massage table was a little tricky but well worth the effort, as my masseuse did a great job helping me assume the proper position and then working out some of the kinks in my rebellious body. Though I’m loath to admit it, I hated taking my shirt off in front of her, as this wheelchair riding gimp retains much of his old vanity. Before getting sick I used to swim a mile a day and for a while had a nice fit swimmer’s body, lean as a barracuda. After 10 years with MS, and five in a wheelchair, I still have a swimmer’s body, only now that swimmer is a walrus. Put some tusks in my mouth and coarse whiskers on my cheeks and I might well be mistaken for Tennessee Tuxedo’s best friend.

On Friday night we had dinner with Harvey and his wife Kim at their spectacular circa 1820 house, which was actually more impressive than any of the old houses at the Strawberry Banke Museum in Portsmouth. I again managed to avoid knocking down any walls or destroying any of the early 19th century details of the house, which naturally wasn’t designed way back when for power wheelchair users. Very shortsighted of the 1820 designers, if you ask me, who should have foreseen power wheelchairs even though the electric light bulb was still decades away from being invented. As is always the case with Harvey and me, even though we hadn’t seen each other in way too long, within minutes the years melted away and it was almost impossible to believe that nearly three decades had passed since we’d engaged in the antics we laughed about over dinner. Does anyone ever really grow up? I hope not.

Saturday was the day of Harvey’s 50th birthday bash, which was quite the shindig, not too big, not too small, with lots of interesting folks with whom to meet and talk. Since drinking not only exacerbates all my symptoms but also usually leaves me feeling like absolute crap for days afterwards, I sipped a little wine while watching almost everybody else around me slowly (or not so slowly) get totally smashed. That in itself was pretty entertaining, but I’d be lying if I said that I didn’t miss being able to get absolutely plastered every now and then almost as much as I miss using my right hand. Karen struck up a friendship with the Qu├ębecois wife of a friend Harvey made when he first moved up to Maine, who shared Karen’s passion for historic preservation and works for museum up in Canada. I spent some time talking with one of Harvey’s neighbors, a noted poet (click here) who teaches at nearby Colby College. Fascinating guy, and in our relatively brief conversation we managed to hit on almost all of the topics usually considered taboo upon first introductions, including sex, politics, and religion. Nothing I like better than keeping it light.

Karen and I stayed at the party till the wee hours, and then headed back to the hotel. The next morning we checked out, had some brunch, and then made the long drive back to New York, a trip that took about 7 ½ hours. We had to make the trek in one day because the van was needed early Monday morning by somebody else who was doing a wheelchair getaway of their own.

So, there you have it, our first vacation in a very long time. Literally none of the possible mishaps I had nervously anticipated came to pass, in large part thanks to the efforts of my sweet and wonderful wife, who handled all the driving, packing, unpacking, and countless other tasks and details needed to make sure I kept myself out of trouble. Honestly, I don’t know where I’d be without Karen, but I’m pretty sure it wouldn’t be any place good. With her help I managed to smash through the confines of my comfort zone, and though the trip was of course tiring, it was also invigorating, a feast for all of the senses, even the ones dulled by disease. Being able to celebrate my buddy’s 50th birthday with him was priceless, as are my newly expanded horizons.

Making this trip gave me the opportunity to give MS a big middle finger, something all MSers should do on a regular basis. So, FU MS, and hello world. I’m sure I’ll still have periods of fret and worry preceding any future travels, and if my disease continues to progress there very well may come a day when I literally can’t take to the road, but for now I proved to myself that I can. As Franklin Delano Roosevelt said, the only thing we have to fear is fear itself. And don’t forget, FDR was another guy in a wheelchair…

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Monday, August 12, 2013

A Few Bits and a Piece: Tecfidera Poll Continued, Interesting New MS Web Community, Hand Controls for Disabled Drivers, and Some Shameless Self-Promotion…

Horatio Nelson Jackson in his 2-seat Winton to...

I know, I know, faithful Wheelchair Kamikaze readers are thinking, “Geez, Marc just did a Bits and Pieces post last time around, and now he’s doing another one? What gives?”

Well, what gives is that Karen and I are embarking on a journey up to Maine this week, to attend my friend Harvey’s 50th birthday party. Harvey and I were thick as thieves (just about literally) way back in the wild and woolly 80s, when many a night would find us in various stages of intoxication prowling the dark streets of Boston looking for a good time. In retrospect, I think the best of the good times we found were in the prowling itself, proof of one of the most important lessons the years between then and now have taught me: it’s all about the journey, not the destination.

And now Harvey will be turning 50 on Friday, with my turn at reaching the half-century mark following a week and a half later, an event which I’m sure will provide plenty of fodder for a blog post or two. I’ve been reluctant to travel the last few years because of my goddamned creeping paralysis, but the significance of my buddy’s 50th birthday has provided the impetus for plans to be hatched and reservations to be made.

Our impending trip up to Maine will be the first time Karen and I have spent an extended period away from home in at least three years, and I must admit the prospect of leaving my comfort zone is a bit anxiety producing. My disability has progressed significantly since the last time we hit the road, and even back then traveling presented some troublesome issues, mostly in the way of unforeseen obstacles, physical wear and tear, and “wheelchair accessible” hotel rooms that appeared to be designed by dyslexic chimpanzees. We’re renting a wheelchair accessible van this time around, which hopefully will decrease the physical wear and tear part of the equation (we previously traveled with my manual wheelchair, which I despise – my arms are too weak to self propel, so I sit in the thing feeling as useless as a two-day-old latke). I do love New England and Harvey, so, WTF, might as well go for it…

I’ve been and will be busy getting ready for the trip, and didn’t want to leave the blog completely devoid of new material, so I figured an abbreviated version of Bits and Pieces would at least give all the lovely folks who read my gibberish a few new links to click on and with any luck some useful/interesting info to digest. I hope the following few items will suffice, as quality versus quantity is a nice correlate to journey versus destination…

♦ First up, a continuation of the Tecfidera poll I started in my last post. So far the responses have been quite interesting, and I’d like to get a bigger sample size to increase the accuracy of the information gathered. As I stated last time around, any Internet poll is bound to be somewhat skewed (since I’m not capturing data from Tecfidera patients who aren’t perusing the web for info), but the numbers accrued should provide a reasonable snapshot of the Internet Tecfidera population, at the very least. If you’ve already answered the poll questions, please don’t answer them again, as your previous answers carry over to this week. For those interested in how things are stacking up, just click the “show results” link after each question to see the aggregated numbers…

How would you characterize the side effects you’ve experienced as a result of taking Tecfidera?

Have Tecfidera’s side effects forced you to stop taking the drug?

(This question should only be answered by those who have not stopped taking Tecfidera) How would you characterize any benefits you’ve felt since starting Tecfidera therapy?

♦ I had the pleasure last week of speaking to Kate Millikan, the founder of a brand-new MS Internet community that takes a somewhat different approach to things than other such sites on the web. My Counterpane (click here) gives MSers and those who care for them the opportunity to track and record their experiences with multiple sclerosis, based on the moods and emotions dealing with the disease elicits in them, in a multimedia diary format. My Counterpane offers a rich, textured experience, providing members with an easy way to record web videos directly to the site, along with allowing for the more typical written and/or picture entries. Members can contribute their own experiences as well as follow those of other patients and caregivers in the My Counterpane community.

Please keep in mind that My Counterpane is a work in progress, and I know that Kate is investing lots of time and energy in making the site as distinctive and compelling as possible. Expect some new features to come online soon, perhaps even some interactive forums that could be as unique as the site itself. So sign up and give My Counterpane a whirl, it’s completely free and may provide a whole new way of looking at the personal experiences shared by MSers.

Oh, for those as clueless as I am, a counterpane is a type of quilt. Since My Counterpane is a site stitched together from the recorded experiences of many MS patients, the name fits perfectly. Unfortunately, I had absolutely no idea what a counterpane is, but now I've learned a new word. Yay! Must pepper my road trip conversation with lots of references to counterpanes (Karen is going to hurl me from the fast moving van somewhere between Connecticut and Maine).

♦ Halo Hand Controls were invented by a man named Daniel Reyes, who lost a leg when he was hit by a runaway car while standing at an intersection in Los Angeles. Mr. Reyes is a bit of a car nut and long time entrepreneur, and he came up with the Halo device (click here), a low-cost and elegant take on automobile hand controls, which allow folks with lower body disabilities to safely drive a car. Most hand control setups cost in excess of $1000, but Mr. Reyes has decided to give away the Halo to those in need, provided he can raise the needed manufacturing costs through a crowdsourcing funding effort on the Indiegogo website (click here).

If you are interested in helping with the Halo Hand Control project, donations from $5-$5000 are being accepted on the site. A $50 donation will make sure that a person in need gets a Halo Hand Control. If you need a Halo, a $250 donation will get you your own Halo Hand Control, as well as provide one to another person in your name. IMO, this is a very good deal for folks in need of hand controls for their vehicle, as installation costs are minimal and, as I noted above, most other hand control devices cost in excess of $1000.

Those in need of a Halo who can’t afford to make a donation can sign up for a waiting list at the Halo Hand Controls User Group on Facebook (click here). Unfortunately, since supplies will be limited, there’s no way to guarantee that signing up on Facebook will get you a device.

Longtime Wheelchair Kamikaze readers know that I rarely endorse fundraising efforts, but Mr. Reyes seems quite genuine in his desire to help others, and the device he invented certainly fills a much-needed niche.

To see how easy installation of the Halo actually is, check out the video below:


♦ My last bit of business is a some shameless self-promotion. Here in NYC, the streets are flooded with taxicabs, but the vast majority of them are not wheelchair accessible. A few years ago, the city tried to roll out an accessible dispatch service, which was a dismal failure. Karen and I gave it a try twice, and both times were left standing (me sitting) on the corner of our block for two hours. If a wheelchair accessible cab showed up, it must have been an invisible one. Now, the city is trying again, and this time the effort seems headed for great success (click here). A wheelchair user can request an accessible taxicab via smartphone app, website, or telephone call, and the city will pay the taxi driver for the trip to the wheelchair user’s location. In all honesty, I’ve yet to give the new service a try, but others have told me that it works like a charm.

As part of the Accessible Dispatch program’s promotional efforts, the folks in charge are maintaining a blog, on which they highlight items of interest to the New York City disabled community. One of the items of interest they picked for their blog, most likely in a moment of feverish delirium, was me (click here)! After an over the phone interview, the good folks at Accessible Dispatch wrote up a way too nice essay on me and my photography, and, for those of you brave (or masochistic) enough to want to listen to the sound of my voice, the post even includes a link to an audio snippet of our interview (please note: as of this writing, it appears the audio snippet is temporarily down. I’ll have to alert the powers that be of the glitch).

Here’s a video of the Accessible Dispatch team at a recent NYC Disability Expo, explaining a bit about how the program works:


Well, that’s it for now, I’d appreciate all wishes of Bon Voyage for our trip to Maine, and might as well throw in a few Happy Birthdays to Harvey as well…

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