MS Musings

I got a question the other day about where would be the best place to relocate to if you have multiple sclerosis. So I put on my thinkin’ cap—and contrary to what my sisters say, it is not tall and pointy—and started narrowing down options. First, obviously, you’ll want to nix anywhere that’s both hot and humid, the MS double sledgehammer (or in WWE parlance, the flying forearm smash combined with the spinning headlock elbow drop), so let’s avoid that. Actually, let’s also include on the no-go list areas that just get plain hot. I mean, hot is still hot. (Sorry Qatar.) So how about the mountains? Um, too snowy and icy. Seriously, if you have any walking issues, snow on the ground will make going anywhere outside a bit like prepping to tackle K2. And let’s not even talk about all the hot tub parties you’d likely have to take a pass on, as hot tubs are the testicular claw of illegal wrestling moves for many of us. Now I guess that means we’ll have to lop off any place in the world where it snows. Ah then, what about an area that is cool but not snowy, like the Pacific Northwest or Scotland? No, no, that won’t work. I probably don’t have to remind you that MSers need more Vitamin D. Plus depression is a big problem with MS and days of rain can enhance those bummed out feelings. Think getting pinned by a split-legged corkscrew moonsault. Yeah, I know, ugh. I hate when I get moonsaulted. Hmm.

Aha! Maybe a sunny area along the coast that is dry. It can’t get too hot by the ocean, can it? Like 113 degrees in Los Angeles last year or 115 degrees in Melbourne, Australia, the year before. Oy vey. And besides, you need to have a fat wallet to get a pad in those locations, something most of us don’t have. Oh, oh, I think I’ve got it. A deserted island with the ideal temperature year round and cool ocean breezes and the perfect amount of sun! Yes! Wait, no. You’d have no access to medical care or Cheetos, two non-starters in my book. So does that mean there is not an MS utopia we should all move to? Honestly, you are probably already there. The best area to live—by far—is where you have the strongest social network of family and friends. Having folks you can count on to lend a hand when you hit a rough patch—physically or mentally—will help you get up faster from the mat, even after an El Kabong. (Note: according to Wikipedia, El Kabong, although it sounds a lot like a nasty relapse, “simply involves breaking a guitar over an opponent’s head. The name is a reference to Quick Draw McGraw who would say this phrase prior to hitting someone with a guitar.” Come to think of it, that is a relapse, and I’ve been El Kabonged more than a few times!)

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.

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!

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!

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.  

I guess I was due. It had been two and half years since my first attack, which numbed the entire right side of my body. Odd, I didn’t see it coming last month. I snowboarded a full day in Telluride. I went shoeshoeing for two hours the following day. I was guessing I just overdid it. Okay, so my right leg was A LOT weaker. Going from the couch to the fridge to get a beer was an ordeal. And lifting said beer with my right arm actually required serious effort. It felt so stinkin’ heavy! And then there was that burning sensation all over my body. As the wave of new symptoms slowed rolled in, each swell eroded my confidence. I wasn’t prepared mentally. One night when my wonderful wife Laura was away, my leg screaming at me, I realized I didn’t have the strength to stand and do dishes. So I just sat down in the middle of the kitchen floor. And cried for five solid minutes. I hadn’t cried about my MS like that since I was first diagnosed, but I needed that release. The next day, I caved and called the neuro to give them an update. Come in the next day, they said. Two days later I was getting my first of three 1,000 mg steroid infusions in the hospital, all the while stubbornly still going to the gym despite barely being able to walk. A week later, I’m now back to my relative “normal” self–the burning is gone and most of my strength has returned. Even though I put on airs of nothing-gets-me-down super ActiveMSer guy, my kryptonite experience in the kitchen–which my wife will hear about for the first time reading this blog (sorry honey)–serves as a reminder that this disease can, at times, be impossibly hard to cope with. (And I fully realize I had it relatively easy!) But cope we must. Tomorrow always dawns another day… and renewed hope.

My dear, dear mother-in-law passed away from breast cancer the other day. She was a friend, indeed a kindred spirit, for the nearly 20 years that I’d known her. When I saw Pat the night before she died, I told my wife Laura that I’d be strong for her. That she needed to worry solely about her mother. But my stiff, robotic walk–brought on no doubt by stress–betrayed me. No matter. I proudly delivered her eulogy the following week, legs (relatively) limber, eyesight barely askew. I miss her.