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.

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.