MS Musings

Oh, my dear Hamlet, you never had to make the difficult decision of whether or not to go on holiday because your multiple sclerosis was acting up. When I was getting diagnosed in the fall of 2006, I promised my wife Laura that I would take her to the one country that we both had at the top of our wish lists, and a country that had so far eluded us on our world travels: Italy. But then other more intense adventures intervened because of my diagnosis: climbing Mayan ruins in Guatemala, snowboarding the Canadian Rockies, camping in the Sahara, glacier trekking in New Zealand, elephant riding in Thailand, and hiking in the Himalayas of Bhutan. Designs to go to Italy had quietly simmered in our imagination until this spring when we began, finally, to plan in earnest. The time to go was now.

Ah, but multiple sclerosis can be like a huge zit—the one that magically appears on a forehead right before prom, screaming for attention at the most inopportune time. Days before our departure I had a good stumble (see the last blog post) and I could sense my legs were going to continue not cooperating. They’d been in a funk since July and it was only getting worse. The night before our transatlantic flight, our bags standing at attention by the front door, I wondered aloud to Laura if we should postpone our dream vacation. We had travel insurance; we could cancel for any reason. If we went, it would be hard. I’d need lots of help, and she’d need lots of patience. But if we did not go, it could be a decision that we’d regret for a lifetime. Amid salty tears, we decided that MS was just too unpredictable and that, yes, Italy couldn’t wait. No regrets. It was a smart decision.

Our adventure in Italy was the cover story for the Multiple Sclerosis Society New Zealand’s quarterly magazine. Click here to read: http://www.activemsers.org/tipstricks/carpediem.html

Last month I had what I consider my first official MS fall—almost four years to the day of my first relapse. Now I’ve had falls before, but they were “planned” falls, where I knew my hosed legs weren’t going to get me far enough—the resulting teetering crash and burns were wholly expected. And the “falls” were more collapses of exhaustion than true face plants. But this one fall, it was as if a gremlin reached out and grabbed my left leg.  I clunked down in such dramatic fashion that Humpty himself would have been proud. I surveyed my splayed-out body for damage —conveniently located on the living room floor instead of, say, the parking lot of Wal-Mart—and it appeared I had escaped unscathed. Not even a rug burn from the berber carpet.

But strange, my left toenail had a white stripe on it. Huh, I thought. I wiggled my toe, no problems there. I wiggled my toenail, and it LIFTED UP LIKE THE HATCHBACK ON A SUBARU OUTBACK. Okay, problems there. I promptly “closed” my toenail and secured it with a band aid. No major damage so no biggie, right? It would have been no biggie, only for the fact that I was leaving on a dream (and long-promised) escape to Italy with my lovely wife Laura… in three days. And I didn’t know it at the time, but I was entering into an MSer’s perfect storm of a vacation: a toe injury, an undetected urinary tract infection, and a surprise fresh relapse that was not yet in full force—to, of all places, a country with more steps, more cobblestones, and more toilets lacking toilet seats than I had ever experienced. But it’s all good. Because oh boy do I have some exciting future blog fodder!

Bottom line: Falls are going to happen with multiple sclerosis. There’s no way around it. Some of us might fall once every blue moon, others as often as a full moon (and half moon, quarter moon, sliver of a moon, new moon, ha!). Don’t let it get you down. Dust off, get up, and move on!

When I heard my MS specialist say that, it was like a swift kick in the stomach. And the dude giving me said kick was wearing metal-tipped baseball spikes. Oomph. That hurt. Over the past few years, I’ve given myself well over a thousand injections. And honestly it’s been super easy. Zero side effects, rare injection site reactions, and only the once-in-a-blue-moon painful jab that elicits a cursing. But a relapse in May, my second in just over a year, was a sobering experience, and not just because I had to lay off beer while I was taking 1,200 milligrams a day of prednisone. It called into question the effectiveness of those daily injections.

That’s always a concern with disease modifying drugs for multiple sclerosis. Even though you don’t see improvements—the role of these drugs is to slow down the MS, not reverse it—you have to trust they’re doing their job. Statistically they all work. Unfortunately, their efficacy is different in every patient. One drug might work far better than another.

So my neurologist tasked me with choosing a new treatment. I knew them all quite well, and we even considered clinical trials. My wife and I had to make some difficult decisions and more may be ahead (for another blog). We’re lucky to have such an array of choices to fight such a nasty disease. That certainly wasn’t the case just 15 years ago when there was a lottery just to have the opportunity to get Betaseron, at the time a new, untested drug that was the sole FDA-approved treatment for MS. So a week ago today I started a new treatment. One door closes, another opens.

On July 7—an auspicious day in many cultures—I went drug free in preparation of going on a new treatment within the next couple of months. To commemorate this next stage of my battle with this disease, I thought about getting a tattoo or piercing. And then I thought about how much needles and pain freak me out. A HELLA LOT. (Heck, I gave up watching medical shows years ago for the sole reason of seeing too many needles stuck in too many arms.) I considered the henna thing, which I did in Morocco, but that seemed too transient and too, well, girly. Skydiving entered my mind and then promptly left at approximately 32 ft per second. What to do? So today, my full head of hair went Army of One (but I left the beard). I told my adoring wife that I would look just like soccer superstar David Beckham … only without the six-pack abs, the shocking-handsomeness of a male model, the perfectly chiseled body, and the $45 million annual salary. Or I’d look like a cancer patient who was having difficulty walking. Bemused, my wife nodded and told me my stubby hair would eventually grow out. At which point she would allow me to, once again, share her bed. After the initial shock (thankfully, she never saw the Mohawk, but you sure can in the ActiveMSers website forum, http://activemsers.wssnoc.net/forumdisplay.php?f=2) she has accepted the lack of locs and has affectionately nicknamed me BP, short for Brillo Pad!

The other day I was reading about a fellow MSers dilemma. Recently diagnosed, he wondered if he should go with his son on a long-planned camping trip—in the heat, no refrigeration for his meds, and an uncertainty about how he would fare in the back country. There should have been no dilemma. If you think you can do it, do it. Don’t wait. Don’t delay. Don’t ever look back and say, “I should have.” Multiple sclerosis is an unpredictable beast that can be as mild as a bell pepper or as nasty as India’s Naga Jolokia, the world’s hottest chile pepper. So last month when Wolf Creek ski area decided to open just for the weekend (in mid April, mind you), there wasn’t a moment of hesitation. I had to go. And I’m glad I did. My last day of the ski season was one of those blissful powder days when my disease all but vanished. But it didn’t start that way.

For my first run, my legs barked at my brain in frustration as I clunked down one of the easiest trails on the mountain. I sat down before the last headwall, wondering if I should take the easier cat-track around or tackle the steeper pitch, which can get a little bumped up.  “You can do it, dude,” said a snowboarder eager to help me overcome my fear of a green run suited for beginners. “What level are you?” he asked. “Expert,” I said. “Former expert.” To say that was sobering. “No problem, man. You got this. Coming back from an injury or whatever, you can do this.” My new snowboard friend was determined to get me off my ass and down the mountain. It worked. The rest of the day, my wife at my side, I went down black diamond runs I hadn’t been able to board for the last two seasons. Everything, inexplicably, clicked. We pounded all day, the legs never tiring. Even when a whiteout hit and the lodge was packed with not a chair available, a woman—who saw me squatting to save leg strength—offered up her seat. She would eat her lunch standing up. I told her karma has a funny way of working out.

The storm easing, my last few runs were perfection—floating arced turns on virgin, untracked powder. I don’t know what next season will bring. But I do know that I won’t have to say “I should have.” Because I did.

When you first get diagnosed with multiple sclerosis (or at least when the doc seriously suspects it), there are a number of different coping mechanisms. You might try to see just how many tears you can cry before your eyeballs dehydrate and start to deflate. You might watch a marathon of Happy Days episodes just because of the show’s ironic title, but when they sing the theme song at the beginning of every half hour, you substitute Crappy for Happy (sing along with me now, Sunday-Monday Crappy Days, Tuesday-Wednesday Crappy Days, blah, blah, jeeze that’s an annoying song). You might contemplate death by chocolate … or ice cream … or toffee squares, only to discover that you only get fat, an unpleasant bloated feeling, and a bit of gas. (BTW, overeating, especially if your comfort food of choice is Activia yogurt, is not recommended.) But, since you found this post, odds are high that you have immersed yourself in Internet research on the disease, and you now probably know more about MS and its treatments than your run-of-the-mill neurologist. If that’s you, take a breath, back away from the computer slowly, and start getting back to living your life. Don’t worry, I’ll keep you updated on any excitement that comes along. You don’t need to spend 8 hours a day (or more) trying to predict your unpredictable future. Been there, done that. So get out and have some fun!

I debated writing this blog. And from the title, you can probably see where this is going and why I’d be apprehensive to chat about it. And why there is a Too Much Information (TMI) warning. If you are newly diagnosed or freak out about the possibility of a “personal accident,” don’t read beyond this sentence. But the bottom (pun intended) line is that if you have multiple sclerosis, bowel and bladder accidents can and do happen more than you probably realize. If it hasn’t happened to you (at least not yet), then reading this might help soften the shock of that first unintended mud bunny. And if it has happened to you, know that you are not alone by a long shot. I can now proudly raise my hand and say, No, I didn’t have time to drop the kids off at the pool. No, I didn’t make that deposit at the porcelain bank. And no, I was not able to help the Browns land in the Super Bowl.

See, driving up to the ski area the other weekend to do a bit of snowboarding, my stomach was gurgling a touch. No biggie, I thought. We parked and I started getting my boots on, jazzed to hit the slopes. The stomach gurgled again. Oh, a bit of gas, I thought. And then that sickening, that-wasn’t-gas feeling hit. The restrooms were at least a two minute walk—no time to stock that pond with brown trout. I had 30 seconds, give or take, to make a decision. I could 1) make some trouser chili in my one and only pair of ski pants or 2) make like a guy from Comcast and lay some outdoor cable. Like hell I was going to let multiple sclerosis ruin a good day on the slopes! I chose number two (sorry, another bad pun) and unloaded, conveniently, in the ski area’s loading zone. (If anyone asked, I was prepared to say, Hey, just following the rules.) Everything went as well as could be expected and for the most part my pavement squat went unnoticed. Until, that is, the parking lot shuttle, packed with eager skiers, pulled up. Oh jeeze. “Umbrella!” I yelled to Laura, who quickly shielded me from curious eyeballs. My day of boarding was saved … and I got some great blog fodder. Hey, it’s just life with MS. Sh*t happens, and then you move on.

On the afternoon of my sister Kathryn’s wedding, I could tell my body was not happy. My vision was getting screwy–a digital alarm clock three feet in front of me was just a blur of red. Walking, and I use that term loosely, felt as if I were on the last push to the summit of Everest–every step a thoughtful and energy-draining endeavor. But it was her day and I wasn’t about to miss it. Dad helped my tie my tie and button my shirt. My wife Laura, who was feeling as miserable as I was (only without the vision loss and walking probs), made sure my hair was in place and that I had matching socks on. Somehow we made it to Kathryn’s wedding on time … and I listened to the whole thing. Until I saw pictures later, I could only presume she looked beautiful. An open bar and delicious appetizers awaited downstairs and in my state none of it sounded appealing. But I said I’d take the elevator down and hang in there for a bit longer. What, the elevator is broken and has a tendency to trap people inside? Yikes. I took the stairs, using railings and shoulders. A half hour later my goose was cooked, as was Laura’s, so we departed without the multi-course dinner. Upon arriving home, my temperature revealed the source of my agony: 102 degrees, high for an adult, excruciating for someone with multiple sclerosis.  But I was still upbeat. My sis had a wonderful wedding … and her new husband had packed us up a doggie bag complete with every item on their extravagant meal, which we were able to finally enjoy a few days later.  

Traveling with multiple sclerosis can often be tricky. Traveling overseas, even trickier. But because I love to travel so much, I usually say pshaw to my disease and dive into the experience with reckless abandon. Most recently I voyaged to Morocco, an enchanting and diverse country in northern Africa. I had to worry about my meds freezing while camping the Sahara desert (Christmas night got down to 36 degrees!), getting run over by donkeys along the impossibly narrow stone paths that weave through the ancient medina of Fez, and fending off with my cane snake charmers and monkey wranglers in the plaza of Marrakesh. Nothing though, challenged my MS quite like a traditional Moroccan hammam. A hammam is a public bath with steaming hot rooms, slick tile floors, and little else. No benches, no railings, no chairs—absolutely nothing to grab onto. It was just me, my bare feet, wet tile, near sauna-like temperatures, and one very important new friend. Fortunately my guide knew about my issues and I was assigned a strapping and impressively chiseled young Moroccan man to lead me through the hammam. Lowering me to the ground carefully in the hottest room, my new companion proceeded to scrub me down from toes to ears while I lay on the warm tile floor, protected only by a bathing suit. And when he scrubbed, I mean scrubbed, using everything from coarse soap to full-on loofahing (is that a word?). I was so clean when I stood up (okay, technically I was lifted up with one swift tug) that it didn’t bother me that afterward I couldn’t see too well and that my balance was even sketchier. Now I’m not encouraging everyone to rush out and do something that amps up your MS symptoms. I’m just saying, don’t necessarily avoid those experiences, either. In minutes my vision came back and I was walking as normally as I can these days … and I’ve got a memory that will be with me until my last breath.

People always give me a strange look when I tell this story. Maybe it’s hoo-haw or total coincidence. See, I think I remember the day and the hour I gave myself MS. When I went in for my Hepatitis B shot (I travel a lot internationally), my doc warned that there had been cases potentially linking the Hep B vaccine and multiple sclerosis. He asked if I had any family history of MS? Nope, I said. Did he have any patients who got MS as a result of the shot, I asked. Maybe one, he said, but it couldn’t be directly linked. I asked him what he would do and he said, “The odds of you getting Hep B on your travels are a lot greater than you getting MS from this shot.” I travel extensively, and planned to do so until I was six feet under. So I said, and this is where it gets a little freaky, “If I’m meant to get MS, I’ll get MS,” and then tapped my shoulder for the injection. A week later my symptoms started: flashes in the eyes. I’m pretty anal about my health—heck, even before MS I always made a mental note of the little things, and often wrote them down in my journal. So when I had my first severe attack eight months later, after multiple visits to the eye doc and to my PCP about other strange symptoms, I looked back for a trigger. When did all this weirdness start? Go figure. Now, do I think the Hep B shot causes MS? Not in most people. Indeed, study after study says no, and I believe them. But with me, it appears it woke up something that had been sleeping. Another vaccination or a cold (or any myriad of triggers) could have woken the MS in me a week, a month, a year later. Or perhaps it would have stayed in its slumber. I’ll never know. For a few weeks I was bummed that I could have given myself MS. But thinking back to that doc visit and weighing all the facts, I would have gotten that vaccine 100 out of 100 times. Destiny? Perhaps, and that’s okay. With all the new friends I’ve made in the MS community and with all the people I’ve helped battle this disease, I wouldn’t have it any other way.