MS Musings

I am currently in a state disbelief. Total befuddlement. See, I was doing my daily stretches, working on my famously tighter-than-a pair-of jeans-three-sizes-too-small hamstrings, when I accidentally grabbed my toes. I know, MY TOES. Huh? What the hell was going on!? Gymnasts grab their toes. Yogi masters grab their toes. Chinese acrobats who specialize in contortionism grab their toes. People with MS don’t grab their toes. I have the flexibility of Melba toast. Reaching my kneecaps and maybe—maybe— touching my shins (if I cheated and bent my knees) was my elasticity Everest. Seriously, the last time I touched my toes was back in seventh grade as a yellow belt in Taekwondo. And I did that only because my instructor was a 7th degree black belt championship fighter with a short fuse for kids who weren’t limber. But there I was, at the age of 42 with multiple sclerosis-induced spasticity my daily enemy, wrapping my hands around my feet. Either I had just torn my hamstring off my femur necessitating urgent surgery and months of rehab… or my 15- to 30-minute daily stretching routine was actually working. I’ll be danged, it was the latter.

While stretching has always been a part of my regular exercise, rarely was it a focus. That all changed when about a year ago my spasticity went into a higher gear. So for months I had been far more faithful about getting in at least one stretching session per day in the hopes that maybe I would be able to hold off taking Baclofen and other anti-spasticity drugs. Heck, I’d been preaching the benefits of stretching for years on ActiveMSers as the single most important exercise you can do for your MS. It was about time I got off my pulpit and practiced. The gains were at first imperceptible. I never noticed that I could reach my shins without cheating. Then my ankles. While my painful spasticity had faded, I never put two-and-two together. And then… and then, I touched my toes.

Multiple sclerosis relapses can bump off the best-laid exercise plans like rival mobsters on The Sopranos. So when a relapse robbed my ability to use my Nordic Track ski machine—my balance was just too wonky to even dare try—I turned to another TV program for inspiration: The View. Wait! No, no, I meant MacGyver. Yeah, the guy who can jury rig the urgent repair of a suspension bridge on the verge of imminent collapse with a single toothpick and a half-used ball of twine.

In its normal state, a slippery death trap of wooden skis, my Nordic Track was in danger of becoming the worst nightmare of an avid exerciser. Yup, a clothes hanger. OMG is right. So I went to work. Folding chair! Check. Stability ball! Check. Bungees! Check. Ipod Shuffle, loaded with thumping music! Check and check. I set out the Nordic Track in its folded position, then placed the stability ball under the contraption that works the upper body, effectively raising it up to a better level. Then I locked it into this new position with a couple bungees. Placing the chair at the back of the ski machine, the MacGyvered contraption was now perfectly set up to use just the pulley system portion (the poles, if you will) while being safely planted on my ass. With the tunes turned up, I can now rock a hard aerobic workout. It just goes to show that sometimes you have to get a little creative—with your own version of a toothpick and half-used ball of twine—to get things done with this disease.

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!

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

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.

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.

I can be a stubborn son-of-a-bitch when it comes to staying active. Tennis is a perfect example. If you looked at my physical ability to play a racquet sport, you would probably say the closest I should be to a tennis court is a Wii and wide-screen TV. I can’t run—or even jog for that matter, my legs are just too sloppy—and when my body warms up from activity, my eyesight vanishes like a hot dog in front of Kobayashi. Picture it. Within five minutes of getting on the court, there’s an immobile blind guy holding what might as well be a flattened pasta strainer in his right hand. And yet I can still compete, even take the occasional set, from my wife, a capable tennis player. How? By rewriting the rules, MS style. First, she has to make an honest attempt to hit the ball at or near me. Second, she has to play double lines. Third, I get as many bounces as I need to give my eyes a chance to pick up the ball.  Now you might wonder if this is fun. Absolutely! I still have a solid forehand and respectable backhand to keep her running from side to side. Even though I only pick up the ball in splotches, I rarely miss completely, watching Laura swing and using muscle memory to gauge when and where to swing the racquet. Although I serve flat-footed—jumping is like running, it ain’t happening—my first serve is better than my pre-MS second serve ever was. I even score a couple aces a set. So I guess my point of this story is that even though I have a mountain to climb, by using enough ropes, a little ingenuity, and, well, bending the rules, I’ll still get there dagnammit.

Over the weekend I participated in a 5K Fit Walk to help raise money for MS. I got to wear a number, start off with a massive crowd, the whole bit where it seems you are taking part in the Boston Marathon. Only it was Albuquerque. And it wasn’t a marathon or even a race, it was a walk. A noncompetitive walk. And yet a walk that saw me cross the finishing line after an hour and 20 minutes to cheering crowds chanting my name. “Go Dave!” “Woo-hoo Dave, you rock!” ”Dave! Dave! Dave!” All for finishing DFL. Dead F#cking Last. How did they know my name? Probably because the volunteer course sweepers had to radio in to the finish about some guy and his wife still on the course. And people were probably cheering because they could finally go home now that the final two stragglers had finished, but I digress. Every volunteer I passed, I thanked. And told them I wanted to make sure they earned their volunteer dollars–no getting out of their posts early. When I went past water stations, I requested they hand me the water as if I was screaming by. I’d grab the Pixie cup, take a swig, toss the rest on my face, and huck the cup to the side just like the pros! Only every time I tried to drink, it went down the wrong pipe, and I’d start hacking and gacking. Walking and drinking is not in my repertoire. How the hell do you drink out of a cup when you are running? Now I do have to admit my performance wasn’t truly DFL worthy. Because the event was so popular, we had to park 1K away (so I ultimately did a 7K walk). I was getting over a miserable cold that had left me blind and stiff as a board just a couple days earlier. And stopping to talk to a number of friends along the way let the pack get away from me. I thought I could make up the ground, but my legs decided to stop participating at about the the 2K mark! Still, with the immense help of trekking poles, I managed to drag my stupid body the full 5K so I could bask in all that is DFL glory. Also know that I DFLed for MSers worldwide. Because the next time you participate in any sport, in any event, you can rest assured that you can do no worse than yours truly. Woo-hoo, go Dave!

I work very hard at making sure multiple sclerosis doesn’t rule my life. But sometimes it does make the rules–rules I don’t agree with, but begrudgingly follow. Case in point: my recent adventure to the Kingdom of Bhutan, an unspoiled country in the Himalayas, rich with culture, scenery, and dramatic monasteries. One of the country’s holiest sites is Taktshang Goemba (Tiger’s Nest Monastery). Perched 3,000 feet above the valley floor of Paro, Taktshang hangs on a cliff face, accessible only by a twisty mess of hundreds of stairs. Rocky, uneven stairs without railings, and precipitous drops guaranteed to take your life with a misstep. With trekking poles I’m a mountain goat, but stairs without railings are admittedly a nemesis, requiring much more concentration and careful foot placement. Was it worth risking plunging to my demise to visit Tiger’s Nest? Odds were good I’d make it without incident, but I recall odds were also good I wouldn’t end up with a crappy disease. I made the difficult decision to pass, and watched with binoculars as my wife and good friend Andy visited the holy monastery. Dozens of people passed me from my safe perch. When a man from Holland turned back due to fear of heights, I was patting myself on the back for making such a wise decision…. But then an 85-year-old great grandmother went by me, barely able to walk, on her quest to Taktshang. Hmm, I thought. And then not five minutes later, a blind dude, grabbing onto his friend’s backpack and using his white cane to identify each step, happily hiked past. Okay, that one stung a bit. But he was Bhutanese (probably a confident climber) and he wouldn’t get vertigo looking down a cliff face (one of the rare benefits of being blind). It’s absolutely inspiring to see others make the best of their disabilities. Sure, having MS means saying no to some challenges that an earlier you could have taken on with gusto. And that’s okay. I’d rather decline a challenge than to be faced with no challenges at all.