MS Musings

When it comes to magnetic resonance imaging (MRI), I have far more experience than a geezing quarterback or aging pitcher. I’ve been in open MRIs, closed MRIs, even portable MRIs on trailers. I’ve had short MRIs (20 minutes), long MRIs (50 minutes), and hella-long MRIs (100+ minutes). I’ve enjoyed in my Tubes O’ Fun silence, music, and even movies (it’s hard not to laugh during Napoleon Dynamite when he talks of nunchuck skills). All so docs can get a better idea of disease activity. But do you want to see the results? On the surface this may seem like a silly question. Why of course you’d like to know how many multiple sclerosis lesions you have in your noggin’. You want to be on top of your disease, don’t you? Maybe. But maybe not. Since my first positive brain MRI, which showed two small lesions, I made the decision to remain in the dark (pardon the MRIesque pun). I’d argue—and so would my neurologist, a ridiculously bright man who actually wrote the book on MRIs (well, one of them, anyways)—that your best course of action might be to NOT know. Here’s why.

If your neuro is an MS expert—and you trust your doctor to do what’s best for your health—you personally knowing the number of lesions, in particular if it is increasing, could make a bad situation worse. Say your MRI is lit up like an arena of cell phones during a love song at a Justin Bieber concert. Option A) Doc: “We can’t count the number of lesions there are so many. Holy cow, I’ve never seen so many. Think a firefly convention in midsummer, ha ha.” Result: You stress out, you get depressed (or both) and people who love you cry and worry. Stress brings on a relapse and you get worse. Option B) Doc: “We’re seeing some activity, maybe we should look at other treatment options.” Result: You look at other treatment options… without stressing the hell out and freaking the crap out of your mom who still worries about you just crossing a street. I prefer Option B.

Independence Day. For some, the July 4 national holiday in America conjures memories of illegal fireworks, beer, and small brush fires caused by inebriated people lighting off said illegal fireworks. But for most Americans, it’s a holiday spent outdoors—all-day picnics concluding with dramatic nighttime firework displays.  How ironic that Independence Day highlights—more clearly than any other day of the year—many an MSer’s lack of independence. For those with heat intolerance, a full day outdoors in the middle of summer is about as appealing as a beer-battered dip in boiling oil (that’ll burn… but it’s a tasty burn). For those with fatigue, trying to survive all afternoon is tricky enough, but to make it through the late-night fireworks? Caffeine infusions aren’t enough. For those with bathroom issues, simply looking at the ubiquitous long lines at the port-a-johns are bladder daggers. And for those with walking difficulties, managing crowds of people, blankets, coolers, and the uneven, grassy field at your local park is nothing short of an impossibility. “Independence” Day? Oh, the irony indeed.

But wait, you can manage. As my physics professor used to say, just use your third floor. Think. If you want to see the fireworks, don’t burn all your energy on doing a BBQ for 14. Stay cool with icy drinks or maybe a cooling vest and umbrella. Limit walking (or scootering) and plan to sit at the back of the field on the edge of the grass. That’s also where you’ll find the lesser-used restroom facilities (and trees for that matter). Well, gotta run. It’s time to crack open a brewski and shoot off some contraband pyrotechnics in my backyard….

Last week was a popular seven days for breaking your leg. Professional race car driver Mike Conway broke his leg (and his back) in a spectacular crash at the Indy 500 (watch it). Pro baseball player Kendry Morales of the Angels broke his leg after hitting a game-winning grand slam home run. Amidst the celebration at home plate, he jumped up and then stepped wrong and then, well, snap (watch it). So when I broke my leg in a kitchen fall the other day—in non-eye-popping, non-dramatic fashion—I knew I wasn’t alone. But I also knew… I was an idiot.

When multiple sclerosis tries to pry away some of our abilities, it’s only natural to hold on tighter. When the disease successfully robs us, even temporarily in a relapse, the push to regain what was lost can feel quest-like. The problem with quests? They take time. Heck, Odysseus, cursed by the gods, was gone for 10 years battling Cyclops and such before returning to Troy. For poor Frodo, it took three whole movies to get and then destroy that damn ring. Sir Lancelot and the Holy Grail he was looking for? Well, he’s still looking. Point is, you can’t really hurry a quest. Patience—methodical patience—needs to be embraced to get where you want to go. Don’t dwell on what you could do; focus on what you can do. And for the love of god, don’t try to do what you could do but currently can’t do (or shouldn’t do, at least safely). You might just break a leg.*

*Ah, it was only the fibula, the smallest bone in the leg. Doc says no need for a cast and that it should heal up completely in 6 weeks. Then I’ll be back to questing!

When I was a Cub Scout (no, never graduated to Boy Scouts), we were taught to always be prepared… and that s’mores were a recognized food group. I’ve since regularly packed s’mores-flavored Luna bars for those munchie emergencies and I’ve tried to be prepared in non-food-related aspects of life as well, but multiple sclerosis has made that a bit more challenging. See, many of us MSers are just accidents waiting to happen. Now one can’t really plan for accidents, um, except for certain particular kinds of accidents. Yeah, that kind. The kind that lends itself to, ahem, disposable undergarments.

So for my 41^st birthday I slipped on my first pair of adult diapers. There, I said it—diapers. Ugh. The whole process was a huge mental hurdle to cross. It wasn’t in my grand plan to wear Huggies when I could see my 30s over my shoulder. But after a few close calls (admittedly, really close calls) along with that sickening panic that is difficult to explain to a non MSer, it was unfortunately time. Now I decided that if I was going to commit, it was going to be whole hog—I’m talkin’ the huge 72-pack of super absorbent Depends from COSTCO. Hell, it took up the whole friggin’ cart, and I was proud, damn it, knowing that I alone could soak up a quarter of that oil in the Gulf. And you know what? It wasn’t the nightmare I feared, it was liberating.

I could go out in public without constantly scanning for bathrooms. That extra drink with dinner? No worries. There are eighty miles until the next rest stop?! Whatever. The best part: the few times in the past nine months I’ve had to employ Operation Depends (as in “I’m Depending on You to Work”), they have, and flawlessly. And unless you are wearing a tight dress where even a thong would be noticeable, these puppies are virtually undetectable (and no, they don’t make a crinkly noise when you sit down). I should have added these to my arsenal against MS earlier—it turned out to be no big deal—but then that would have been too darn easy… and my ego certainly would not have allowed it.

*Travel tip: use your (clean) disposable clothing to pack around breakables. And added bonus: the longer you travel, the more room you have in your luggage for souvenirs!

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!