Tuesday, March 18, 2014

A Final Danke Schön

I’ve long gone to great lengths to avoid German. And I’ve always failed miserably. Alas learning a foreign language was a requirement in high school, so I stumbled and bumbled through three years’ worth, all the while wondering why I didn’t take Spanish. (This lament was only amplified when I moved to New Mexico.) In college I specifically chose a major, electrical engineering, that had zero foreign language requirements. Yippee! The downside? I quickly discovered I had as much aptitude for being an engineer as a goldfish with a slide rule. I also had zero motivation—I was supposed to be a writer. Curses. For me to get a college degree, I had to take a foreign language. Four entire semesters. Two entire years. Sixteen ungodly credit hours including lab time. I was doomed to fail. Until I met a tall blonde German angel—Trish Hornick.

“You took three years of German in high school… and all you remember is how to count to ten?” Trish, her uncommon laugh echoing through our dorm, was quick to pick up on the obvious. Although she had no accent, she was born in Munich and her entire family spoke German. And she agreed—inexplicably and for reasons I will never know—to help me wade through Deutsch, to help me graduate. We would become lifelong friends.

I didn’t realize how successful Trish had been until more than a dozen years later when I tried to communicate with an innkeeper in Dürnstein, a picturesque Austrian town on the Danube. Other than perhaps the ability to count to ten (sound familiar?), the innkeeper spoke no English. None. So I pulled up a chair and we, well, chatted in broken German for over 15 minutes. I told her about my family, my work, even the weather in Albuquerque. What the hey? I was talking—conversing—in German. I was so excited that I couldn’t wait to call Trish to tell her of such an epiphany.

Earlier this year I was going through greeting cards from the holidays, giving them one last glance. Over the years, that stack of Christmas wishes has gotten smaller and smaller. Using the postal service is so passé these days—Laura and I are fortunate just to get photographs with pre-printed greetings carefully sent by Costco. But there was one single card I could not part with. It was a richly decorated handmade greeting covered with snowflakes … from Trish. A piece of art born from an envelope. No two will ever be alike. The one-of-a-kind snowflake card. And my German angel.

I e-mailed Trish to tell her just how fond I was of her artwork, not mincing words. “I'm like, what the hell company makes a card this nice? Ohhh. Duh.” A minute later the phone rang and we chatted for the next half hour. About things friends talk about… and probably having another laugh about my pathetic German. It was the last time we ever talked.

For all the fantastic times and for the unforgettable help in German, Danke schön, Trish. Tschüss.

Trish Hornick-Rexrode died March 6, 2014 in a car accident. Her husband, Drew, who mirrors Trish in remarkable generosity, survived.

Monday, February 24, 2014

Timing is Everything

I recently came across an interesting factoid of nature: that the average mammal, from mouse to elephant, takes about 21 seconds to urinate. Clearly I am not the average mammal, as it often takes me 21 seconds just to unbutton my jeans with my bumbly MS fingers. And then, if you permit me to discuss the 16th letter of the alphabet a bit more candidly, it takes minutes for me to fully empty my bladder. Poor Laura could get through not one, but two sections of the New York Times before I’m done tinkling. Admittedly, it is a touch embarrassing when friends and family wander back into restrooms to “make sure I was okay”—as if I might have forgotten to lift the toilet seat and gotten my ass wedged into the bowl or needed a new Sharpie for all the graffiti I was scribbling onto the stall walls—but that’s life with multiple sclerosis. Docs call it urinary retention and hesitancy. I’ve gotten used to it. But that doesn’t make it any easier. And after a recent trip to Northern Europe, I discovered that having a rather slow flow can make using the restroom a lot more memorable.
Take this pristine handicapped bathroom at Oslo’s airport. Look at how brilliantly clean it is—sunglasses should be mandatory. Heck, a heart surgeon could do a triple bypass in here without risk of patient infection. There’s a good reason why. If you look on the wall, you’ll see a digital “hygiene monitor” with a countdown of the number of minutes left before the next inspection. Exactly. I had precisely 55 minutes left to pee before a coordinated team of uniformed Norwegian inspectors wearing orange jumpsuits barged through the door to clean the very toilet I was sitting on. It’s challenging enough to pee when you’ve got a disease that affects the bladder and how swiftly it empties. But add a timer?! Now I was on the clock, and we all know how easy it is to pee under pressure when you have MS. Thank god I made it out in time.
But I wasn’t so lucky in Hamburg. When I started to trudge down a long flight of stairs at one German restaurant to get to the facilities (bathrooms are often downstairs in Europe), the wait staff ushered me instead around the corner to a handicapped restroom that was being blocked by boxes and brooms. No wonder I had missed it! Upon entering the bathroom, it became clearly apparent that the folks tending to this toilet were worried about gimpy people with loose stools. There were 16 rolls of toilet paper within arm’s reach of the potty. But if you were to run through those (yikes, one of those days), you had a full pallet of TP in the corner. If felt like I was taking a leak in aisle 16 of Costco. While I was laughing to myself about the ungodly amount of paper products at my disposal, I heard boxes moving, brooms being propped against my door. I had taken too long—I was being entombed. Quickly I assessed the situation: I had access to water, so I could live for weeks, and I had a lifetime supply of Charmin. But horrors, no German beer. It was indeed a desperate situation, so escape was mandatory. I gingerly pushed open the door and the result was as predictable as the sunrise. I made such a racket that the restaurant goers that afternoon probably are still talking about it to this day.
It couldn’t get much crazier, could it? Oh, don’t dare underestimate me. Just ask the poor residents of Copenhagen. In the heart of the Danish city, there is a large public unisex bathroom that is manned by a couple of attendants who keep the facility in ship shape and direct cross-legged visitors to open stalls. When they saw gimpy Dave, though, they pointed to a special door. With the turn of a key, the automated sliding door quickly whooshed open like I was on the set of Star Trek. Totally trick. Instructed that the door closes by itself, I wandered into the large, handicapped accessible bathroom and waited for the door to slowly track back into a closed position. (It’s important to note that the closing of the door is much slower, probably so it doesn’t slice a wheelchair user in two.) In any event, I was proceeding with the business at hand when I realized that I technically hadn’t locked the door. Heck, the door itself didn’t even look fully closed. I then determined that locking said door was the most prudent course of action lest the attendant forget about me and open the door while I was midstream. Fortunately, there on the wall, was a button with a key. The lock button. So with pants and underwear around my ankles, I waddled with my gimpy MS legs over to the lock button to properly lock the door. Only when I pressed the lock button, it dawned on me that it might not be such a button. WHOOSH. The door flew open, and suddenly I wasn’t on the set of Star Trek. Or Star Wars. Or Battlestar Galactica. I was in a horror movie taking part in the obligatory naked scene as I was suddenly flashing all of Copenhagen. I waddled as quickly as one can waddle with MS to the corner of the bathroom, and proceeded to then moon all of Copenhagen, while waiting for the door to slowly—ever so slowly—close. God only knows how many lives I’ve scarred in Denmark. I fear future Hans Christian Andersens are no longer penning the next Little Mermaid but instead writing The Naked Dude. Jiminy crickets.
So is there a lesson to these three tales? Not really. Just pee faster (no pressure). But with multiple sclerosis, good luck with that.

Wednesday, February 5, 2014

2014 MS Blogger Summit, Day 2

When I received an invite to attend an “MS Blogger Summit”—with travel, accommodations and food comped for me and my caretaker (aka wife)—my right eyebrow went skyward and my Spidey Sense started to tingle. Either that, or my MS was just acting up. In any case, I was suspicious. While I’m not anti-Big Pharma, I prefer to keep them at arm’s length, approaching them with the same caution I’d use when stepping over a barbed-wire fence or juggling chainsaws.

Why would a drug company summon a gang of nine bloggers, most of whom did not use their product, to dissect their outreach to the MS community? More than a few of us were skeptical. After all, while the Novartis folks we were meeting with work in a variety of arenas within the company, they all still are working toward the same ultimate goal: sell more product. How would they try to woo us beyond free-flowing Yellow Tail and 14-second limo rides? Curiously (and thankfully), they didn’t even try. Instead, all 11 Novartis reps—not just specialists in social media, advertising, marketing, and public relations, but nurses and neurologists—listened intently, asked relevant questions, and answered concerns. (Thanks, again, to those ActiveMSers who submitted questions to me in advance.)

Our panel of nine was moderated flawlessly, which maximized our time and allowed us to tackle myriad topics, from the nitpicky (easier-to-open packaging) to the global (how to better assist the MS community). The one thing that was rarely discussed: Gilenya. The expected sales pitch never came. But we were all candid as to what was wrong with the pharmaceutical industry in general. Lack of transparency. Lack of honesty. Lack of authenticity. Blogger Matt Allen said it best: “Enough phony images of people flying kites and riding bikes.”

In truth, all pharmaceutical companies are somewhat hamstrung in their outreach, for better or for worse, by strict FDA regulations. Many of these regulations make brilliant sense and we need them in the industry. But some, hmm. For instance, every Gilenya Tweet needs to be approved by the FDA. Every. Single. One. Even if it has nothing to do with the medication. The four-word Tweet “Have a great weekend” would need approval, which takes days. And there can be no mention of multiple sclerosis or any benefit of the drug without a complete list of all the side effects. So don’t be personally offended when they don’t respond for days (or ever) to your Tweet or Facebook post—they can’t. And when regulations change, which is often, web pages (like a YouTube channel) will randomly go down so drug companies can revise them to come back into compliance. It’s a tricky dance, like trying to cha-cha while skydiving.

If there was one general take away with our posse of posters from the summit, it did serve to at least humanize Big Pharma. They listened, and listened intently, or at least so it seemed. Hopefully some of our advice—and we tossed out lots—will be implemented, and the MS community as a whole will benefit. But before we all join hands and sing Kumbaya, a few too many on the Novartis side of the table used the phrase “fair and balanced,” as in that’s what they were striving to accomplish with their outreach. That’s like saying “I’m trustworthy, so trust me.” Guys who say that, well, I don’t trust. It lacks authenticity. If you are truly “fair and balanced” you should never have to say so—it should be readily apparent in your actions. Novartis clearly has work to do, as do all pharmaceutical companies, but after our summit, it appears they may be on the right track.

For takes from a few of the other bloggers at our meeting, all of whom I now consider friends, click on the below direct links.

Thursday, January 30, 2014

2014 MS Blogger Summit, Day 1

When the marketing folks at Novartis (makers of Gilenya) conjured up an MS Blogger Summit, inviting a group of nine diverse posters for an all-expenses paid trip to the sleepy climes of Morristown, NJ, they probably had a preconceived idea of how the event would unfold--engaging in discussions about the communication needs of the MS online community while getting candid feedback on some of their social media efforts. And it would all start with a casual, friendly welcome dinner the night before, just steps away from the hotel. However, they didn’t count on a few things: single digit temperatures, piles of snow, icy sidewalks and a certain smartass blogger.

“I sure hope the newspaper headline tomorrow doesn’t read ‘Bloggers with MS Tragically Perish on Icy Jersey Streets. Novartis Reps: Our Bad.’”
Dave expresses concern, while Nicole smiles in the face of danger.

I often voice my opinion with tongue firmly in cheek, but there is usually just enough truth for one to take pause. And after meeting me only minutes earlier, and not fully adjusted to my candor, the representatives from Novartis likely were mortified. A gaggle of MSers, including one using a scooter and another forearm crutches (yours truly), were trying to walk to a restaurant a scant 269 feet away from the hotel. The problem? Our path was blocked by berms of fresh snow, requiring us to walk down the street to the crosswalk ... that was still chockfull of snow. (For the record, the temperature that night plummeted to a low of one degree, and let’s not even discuss the wind chill.) I was merely pointing out the obvious, and it wasn’t going to get any safer. Wine and beer was going to be served with dinner. To people with MS. Who may have balance issues. A perfect storm was brewing.

Around the dinner table were individuals with a delightful mix of talent: blogger superstars Nicole Lemelle (www.mynewnormals.com) and Lisa Emrich (www.brassandivory.org and www.msbloggers.com), author Jon Chandonnet (http://jonchandonnet.com/blog/), clinical trial advocate Jeri Burtchell (www.partnersinresearch.org), longtime poster Joan Wheeler (www.shortinthecord.blogspot.com), community advocate Jodi (www.jodibeansblog.com), and wise-cracking, heal-wearing Jamia Crockett (www.mymsheels.com). My wife Laura and Nicole’s engaging husband Tommy joined in as well. Only 23-year old Matt Allen (www.mattsms.com), who was arriving later that night, was absent.

To say we all bonded was an understatement. After all, each of us realized this may be our final meal given the conditions outside. At least I would have an opportunity to toast one last year of marriage to my wife Laura; it was our 21st anniversary that night. And with the New York/New Jersey area trailing only the West Coast in wineries, it was bound to to be a special toast.

“We have red--and we have white.” Our waiter was holding up two magnums... of Yellow Tail. Many New Jersey restaurants have a BYOB policy and Novartis, in a clear effort to wow bloggers with frugality, procured the Australian wine best known for being served free at office get-togethers. It’s not to say I won’t drink YT, and indeed I even have a special bottle in my closet. From 2006. I haven’t found anyone to take it off my hands in eight years. I suddenly felt more in a beer mood, and I wasn’t shy about saying so. About this time the poor folks at Novartis were no doubt rethinking the wisdom of inviting me.

They shouldn’t have. I give everyone I like personally a hard time, even folks I’ve barely met. To their credit, it was because of their efforts and careful vetting of bloggers that the evening unfolded enchantingly (complete, yes, with Hopfish IPA from New Jersey’s own Flying Fish Brewery). Indeed, we were all having such a wonderful time, none of us wanted the evening to end, and not just because of the impending harrowing walk home.

We needn’t have worried. Safety being a (newfound) priority, a warm ride was waiting for us in front of the restaurant. Due to liability reasons, Novartis had to use a car service--no personal chauffeuring allowed--and there were few options available at a moment’s notice. So a stretch limousine drove us the .05 miles to the hotel front entrance. Fourteen seconds. Novartis wanted to make sure that their first-ever MS blogger summit the following day was going to go off without a hitch ... and with all attendees fully, and safely, accounted for. Spoiler alert: they succeeded.

Wednesday, January 1, 2014

Keeping Your Resolutions

For most people, New Year’s resolutions go the way of fleeting fame, re: the Man with the Golden Voice. (Forgot him already? Rewatch his viral video from 2011 here: http://www.youtube.com/watch?v=6rPFvLUWkzs). Resolutions start out with the best of intentions and then after a few weeks (which as the formerly homeless radio announcer discovered may or may not include a visit to Dr. Phil and a trip to rehab) they crumble into fine dust and skitter away in chilly late January winds. There has to be a better way.

It turns out there may be: announce your intentions, say researchers. In particular, tell strangers, like those on an internet forum, about your designs for a better you. Studies have found that the more folks who know about your resolutions, the more folks you’ll have in your corner to root you on to accomplish your goals… and the more pressure you’ll put on yourself to make good on your commitments. And why strangers? Unlike a skinny family member who might relish being “the thin one,” compatriots like those on the message board of ActiveMSers (http://activemsers.wssnoc.net/index.php) don’t have hidden agendas. Better yet, you share that common bond of having multiple sclerosis and understanding the daily challenges involved in fighting a chronic disease.
So you might not know me, and your resolutions might have already moved back to a shelter in Ohio by the time you read this, but know this: I believe in you. After all, you’re here, right? Sometimes that first step in turning a new leaf is more of a shove from behind. So get your a$$ in gear! You can do this. Absolutely you can. Just let me and your virtual friends help you out.

Oh, and how do I guarantee my resolutions stay intact every year? Easy. I always make a resolution not to make any more resolutions other than the one resolution not to make any more resolutions. Works like a charm every January 1st.
Originally published January 25, 2011. Edited and expanded for clarity.

Tuesday, December 10, 2013

The Buzz of Hope

Sometimes you can feel the buzz of hope, that overwhelming sense that life is going to get better, that the future is brighter than the sun itself. I’ve felt it before, in 1993, when my wife and I visited South Africa and unknowingly witnessed the final breaths of Apartheid.

It would have been easy to cocoon in the picturesque harbor of Cape Town and watch the daily migration of clouds lift over Table Mountain. But our experience there unfolded in unexpected ways as travel often does. A visit to the vast Khayelitsha township—300,000 living in makeshift ramshackle homes—as part of Operation Hunger. A friendly chat with a black South African followed by an equally friendly handshake—it was his first conversation with a white person. Even a chance meeting with archbishop Desmond Tutu, recipient of the Nobel Peace Prize, on a day when sickness left little opportunity for exploration.
And through it all there was that buzzing. That buzzing. You would have felt it, too. It was inescapable. Barely a year after our visit, Nelson Mandela would be elected president, Apartheid would be over, and the country and its people would be changed forever for the better.
With the passing of Mr. Mandela, I am reminded of that overpowering feeling of hope. And lately I’ve been feeling that same buzzing. Now hold your horses, naysayers might say. It’s just the paresthesia from my multiple sclerosis or that L’Hermittes zap that comes from tilting your head down. Perhaps it’s a little cog fog delirium brought on by this disease. But they would be wrong. There is no doubt that the buzz is there. A buzz in the MS research community that a breakthrough is on the horizon. Maybe not this year or next. It hasn’t reached the crescendo I felt in Cape Town, but it’s building. It’s definitely building. Do you feel it?

Thursday, November 14, 2013

Managing MS Endurance

This past weekend while hiking in Sedona, I walked more in a single day than I had since 2009—2.9 miles, over 6,200 gimpy steps. Of course I realize this might not sound like much, especially if you do the math. I mean, it would take me nine full record-setting days to accomplish a single marathon, which apparently any remotely athletic Kenyan can run in under three hours. But with multiple sclerosis doing a number on my legs, it’s cause for a minor celebration, like a Snoopy happy dance (sans dance).
Even though these days I'm able to walk for up to 75 minutes straight with my forearm crutches, my legs afterward turn into floppy rubber chickens—the kind you’d see in an old comedy skit. These two appendages that presumably make me a biped are beyond hosed for the rest of the day. The type of hosing that makes you debate whether or not you should have a beer post epic hike. Yes, a beer would be tasty. Yes, a beer would be frosty cold and a just reward. And yes, a beer would make you eventually have to pee, necessitating you to get off the darn couch and walk to the bathroom. On rubber chicken legs. Honestly, at those times dehydration never sounded so good.
After hiking to exhaustion a few times, I figured I had two options if I wanted to maintain healthy levels of hydration and still enjoy cerveza. One, relocate the hall bath so that it was within arm’s length of the couch or two, find a way to avoid rubber chicken legs. With my wife Laura nixing option one in the clearest of terms (or any variation of option one, aka empty Gatorade bottle), I was left with managing my endurance more strategically.
So to prevent blowing up my thighs just to prove, ostensibly to myself, that I can still motor for an hour at a time (Oh, Dave, you are so strong and manly even with your disease), I swallowed that ego deflation pill and figured out how to dole out my energy output: Force myself to take regular breaks.
Now when I hike, my wife/Sherpa unfolds a small camping stool every 15 minutes and I take a 3-5 minute break. Even if I’m feeling fresh. Even if there is a great vista point a few minutes up the trail. Even if there is a hiker doling out free microbrewed beer a switchback ahead. (Thankfully that particular dilemma has never materialized.) These regular, scheduled breaks help to keep the legs from bonking and to avoid the inevitable implosion at the end of a long (for me) hike.
So how did I manage the record 2.9 miles that day? Deliberately and patiently. I hiked a little over a mile in the morning (3300 steps), and then another mile in the late afternoon around sunset—both hikes in cooler weather as I avoided the midday heat. In between I managed to add nearly another mile strolling around seeking food, shelter, and toilets. Again, no marathon sessions, just steady plodding.
With this disease, we all desperately want to be the hare, to prove to ourselves we aren’t that disabled, we aren’t that restricted by our multiple sclerosis. But as Aesop’s fable dutifully preaches, it’s often the tortoise that enjoys the spoils … and gets to celebrate with a happy dance, albeit a slow one.