Supplements: A Cautionary Tale of Betrayal

When I heard the news, I was speechless. How could basic supplements cause this? About 80 percent of people with multiple sclerosis take vitamins and dietary supplements for their disease—so yes, I told my neurologist, I took a host of multi-colored pills every day. Fish oil. Glucosamine. Chondroitin. Daily multivitamin. Melatonin. Others…. “Stop them all immediately,” he said. So I threw each pill bottle into the trash, probably a hundred dollars worth or more. There wasn’t anything else I could do.
In the spring of 2009, my multiple sclerosis was behaving badly (imagine if Charlie Sheen and Lindsay Lohan went out on the town together). Two relapses in the past year and an active MRI had convinced my doctors that the Copaxone I was taking, which has worked so well for so many people, was just not slowing my disease enough. But there was a new drug in Phase III trials called alemtuzumab, a cancer drug also known as Campath, that looked incredibly promising for MS in early testing. Fortunately the trial was still recruiting—and I looked to be a perfect candidate.
I sailed through the battery of qualification assessments. All that remained was a simple blood test to make sure my body would have no problem handling the monoclonal antibody. And that’s when I got the phone call: there was indeed a problem. Several key values measuring liver and kidney function were low—below the minimum requirements for the study. Something was throwing my body out of whack. And that something was likely one of my supplements, the very supplements that I thought might help me with my disease. I was mortified. I did this to myself, and now my only hope to get into the trial rested on a retest in four weeks.
So I shaved my head (hey, I was grabbing at straws), stopped all supplements (which ones were the culprit I’ll never know), and waited impatiently for my luck to change. It didn’t. Although my numbers were improving, it wasn’t fast enough. My MS had turned aggressive—and now I was permanently excluded from a trial testing arguably the most potent MS drug in the pipeline (UPDATE: releasing soon under the drug name Lemtrada). Curse words and tears flew until I remembered there was one other clinical trial that I might qualify for—one that I had dismissed earlier as too crazy, too desperate. It didn’t seem so crazy or desperate anymore. And, it goes without saying, those supplements were staying in the trash can.
Originally published May 18, 2011, edited for clarity.


And We All Fall Down

I did something the other day my wife thought was impossible: hurt myself while sleeping. In the nearly 20 years we’ve been married, we’ve slept in hundreds upon hundreds of different beds around the world. (One might say we sleep around, but let’s not.) We’ve slept in mammoth beds the size of entire bedrooms and on barely padded floors in Buddhist monasteries. We’ve slept on planks in China, with bedbugs in India, and in the wilds of Kenya’s outback. We’ve slept on beds in tree houses, beds in caves, beds in former palaces, beds in deserts, beds in castles, beds in haunted hotels. And not once have I ever fallen out of one, even in roller-coasterish 30-foot seas or in tippy riverboat hammocks. Well, there’s a first time for everything.

Falling is a fact of life with multiple sclerosis. Indeed it is a fact of life, period. You will fall. It will hurt. You will curse. And I try, usually successfully, to avoid kissing the pavement, hugging the rug, smooching the linoleum, and mowing the grass with my teeth. I am not shy about using aids, especially after my broken leg experience a few years ago. Canes, trekking poles, forearm crutches, walkers, and wheelchairs are all in my arsenal. But these aids, I discovered, are relatively useless when you are sound asleep. On a cot. That is listing.

Rule #1: Don’t sleep in a listing cot. Rule #2: If you violate Rule #1 and fall out of bed, do not try to stop your fall by putting all of your weight on your right big toe. That hurts and you will curse. Which is what I did at 5 in the morning, waking up my angel of a wife with a start for the second time in as many months. Worse, I didn’t even get to finish my dream, in which I was probably running around chasing stuff and humping legs like a spazzy dog that had just lapped up a bowl of Red Bull.

The pain radiated up my leg with every step, and eventually the toe turned an appetizing shade of spoiled blueberries. At least I wasn’t on some romantic trip to the Grand Canyon, celebrating getting engaged at the world wonder exactly 20 years ago. Oh, wait… I was. Ah, but all was not lost. We managed to deal—as we all have to do with multiple sclerosis, patient and caregiver alike. We couldn’t quite find the ledge where I proposed—and it was most definitely a ledge as I wanted to have an easy out if she said no (kidding)—but it didn’t matter. Bum toe and all we were living life as best we could.

As everyone with this disease knows, despite our most determined efforts, some setbacks are unavoidable. (Like hurting yourself when you are sound asleep!) We dust ourselves off and keep living. And yes, we’ll fall again. And we’ll dust ourselves off again. And keep living….

Hamstrung with Hamstrings

Two years ago, on December 29, 2010 at approximately 1:26 p.m., I entered 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 in 2009 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.
Originally published December 29th, 2010. Edited for clarity.


Be Alert to Other Monsters

I have an uncanny knack of hurting myself in bizarre ways. A month ago I dorked it up and broke my pinky toe on a closet doorjamb rushing to get a bathrobe so I wouldn’t have to answer the doorbell naked. That got me wondering… What could I do to top that? I pride myself on being an overachiever, going the extra mile. When I do something, I do it right. So the other day, at 4:21 a.m. (give or take), I rolled over to my wife, who was sound asleep like an angel resting on a bed of clouds, and cooed into her ear something to the effect of “Honey, there is a chance I am having a heart attack.”

That’s perhaps the last thing you want to say to your spouse at 4:21 in the morning. Those heavenly sleepy clouds dissipated in a hurry and my angel was now propped up in bed with frazzled hair, big eyes and a suspicious crooked eyebrow. But I felt I really didn’t have a choice. I woke up ten minutes earlier with uncomfortable chest pain and difficulty breathing. It didn’t feel like an MS hug and it couldn’t be a heart attack, could it? I mean, I exercise vigorously every day, I’m only 44, and there is no family history. So naturally I did the first thing one always does in a potential medical crisis. I Googled it. And what did Google tell me? Stop Googling, you idiot, and call 911.

Our house is less than five minutes away from the nearest hospital—we could drive there quicker than most ambulances could even get to our home. So the two of us hustled to get dressed (I carefully avoided doorjambs) and soon we were in the ER surrounded by doctors and nurses. It’s amazing how fast the medical staff works when you complain of chest pains. And my first doc didn’t dim my concerns. “I’ve had a few cases like yours where I would have bet the house there was no heart attack, but the tests came back shockingly positive. Or it could be gas.”

Did I wake up Laura at 4:21 a.m. and have her drive me to the emergency room because of some digestive issues? Now I was doubly scared. But when some liquid concoction I swallowed didn’t help matters, an overactive colon seemed unlikely. We were stuck waiting for the required six hours before a blood test could rule out a mild heart attack. Another doctor had other suspicions.

“What did you do yesterday?” I just exercised, I told him. Tried some new stuff. Lots of twisting with heavy weights. “Hmm. You strained your chest. When the test comes back negative you can go home. Take it easy for the next few days.” The paper he handed me described my issue perfectly. “A strain of the chest is due to stretching and tearing of the muscle fibers between the ribs. This may occur as a result of strenuous lifting or twisting injuries of the upper back. This usually causes increased pain with movement or deep breathing.”

Mission accomplished! I dorked it up to an entirely new level, surprising even myself. But seriously, there is a lesson to be learned here. When you have multiple sclerosis, it’s easy to attribute every symptom to your disease… and then ignore it or push past it. The reality, though, is that we are not immune to life’s other maladies. Don’t ignore or overlook symptoms. It could mean life or death—catching a cancer early or a stroke before it does permanent damage. Or it could just be some mad gas or a textbook case of dorkness.

Finishing DFL in a 5K MS walk

On a September weekend in 2008 I participated in a 5K Fit Walk to help raise money for multiple sclerosis. 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!

Originally published September 30, 2008. Edited for clarity. Photo taken two months earlier, but I looked equally toasted.


The World’s Most Expensive Beer

The other day I got a $106 tab for a single beer. At first I was upset, even outraged. Unquestionably this was the most I had ever shelled out for a pint. Now don’t get me wrong, it was a good beer, even a great beer with its palate-waking hop kick, creamy thumb of a head, and the artful latticework of its Belgian lace. But it wasn’t worth $106. Honestly, it should have been far more expensive—at least $256.

See Burlington, Vermont, is known for its delicious microbrewed beer. The city is also known for its lack of parking downtown during the height of tourist season. So when a space opened up directly across from arguably the city’s best brewery—a handicap parking spot no less—I deemed it destiny. Even though we had time for only a quick pint before our dinner party, we simply had to stop. You know where this is going.

In that half hour, my handicap placard weaseled its way off of our rental car’s rearview mirror in a feat rivaling Houdini’s famed suspended straightjacket escape routines. Either that, or Laura was right. In my haste to enjoy suds I hung the placard a bit too hastily, also known as complacent placard placing (CPP for short). My little white wheelchair dude was lounging on the passenger floorboard when we returned and a $100 ticket was dutifully sandwiched between our wiper blade and windshield.

I was appalled.

That’s it? I spend almost that much to fill up the gas tank or go to the movies (granted, 3D with popcorn and drink, but still). That’s not a deterrent, that’s an insult to anyone who has lost a desperately needed parking space to a two-bit scofflaw.
I applauded the Burlington police department for giving me a ticket and told them so. I presented my handicap placard, explained what happened, and they thankfully waived my ticket. But I also told them those fees need to be higher. If someone wants to rob us, make the fine more than a slap on the wrist. Make it $250, or better yet $500. Make it hurt. Make it memorable. Make it so it never happens again.


Beware the Piranha

As I sat in a tippy wooden dory deep in the Amazon rainforest—dripping wet with sweat, DEET, and the remnants of a sudden afternoon shower—I couldn’t help but wonder about the wisdom of my decision to spend an afternoon fishing. Specifically, fishing for piranha.

In theory, catching these little terrors of fresh water doesn’t take a lot of skill. It’s pretty basic: raw beef and a hook. To get their attention, you flail your pole around on the surface of the water and then let the bait sink, as if some living thing had just croaked. While piranha have the capacity to tag team a live cow and munch it to the bone in a matter of minutes much like a teenage boy who skipped lunch, they’ll only go there if they are trapped and really, really hungry. They prefer snacking on dead stuff that won’t fight back. So that’s where cubes of Brazilian steak come in handy. Lots and lots of cubes. See, I quickly discovered these little buggers are both sneaky and fast. Pretty much as soon as I’d feel a tug and yank up the line, I was left with a freshly de-meated hook and no fish.

About a dozen steaks later, I came to the realization that all I was doing was feeding the piranha like one would feed a pet dog. (“Does little piranha want a treat? … Ohhh, yes you do, yyyes you do.”) Plus, I was pretty certain that giving away all this meat was ensuring a vegetarian conclusion to our Amazon adventure. And then I got another nibble and wrenched up my pole. OH MY GOD I HAD HOOKED A REAL LIVE PIRANHA … IN GENUINE 3D! Here’s where things got interesting. Apparently there are a lot of nine-toed fishermen in the Amazon. I had never considered the possibility of what would happen if I actually caught a toe-eating fish. Getting it off the hook before it ate said hook—then the line, the pole, and then my arm—was now job number one. So I did what any brave angler would do: I threw the pole to our guide in sheer terror. (But not before I posed for a picture with my fearsome 3-inch catch as my wife, clearly scared to death, looked on.)

That afternoon I had wanted nothing more than to catch a piranha. Until I caught one. And perhaps that’s the teachable MS lesson in all of this. Be careful what you wish for—it might not be everything you want. I know many of us with multiple sclerosis have been clamoring for years for an oral drug instead of medications that require a stick. And now an oral disease-modifying medication is available with more in the pipeline. But new drugs come with their own list of side effects (some potentially serious) and a treatment history that is shorter than a Mike Tyson fight circa the late 1980s. If injections or infusions are working for you, perhaps the best course of action is the status quo. For now, at least. After all, you never know when you’ll end up with a piranha at the end of your line.

Originally published February 16th, 2011. Picture and caption added.

Hating Snakes and Bridging Fears

Indiana Jones and I have a lot in common. We hate snakes. We often travel to exotic locales. And we somehow get ourselves into sketchy situations that inevitably involve rickety wooden bridges and potentially calamitous falls. One would think I would avoid said bridges with my current walking challenges, namely balance requiring the use of forearm crutches. Yes, one would think.

But when I’m out hiking, enjoying nature’s gifts of fresh air, summer wildflowers and cow-dung landmines, thinking is usually low on my list. After all, my brain is focused on checking out all the pretty blooms while avoiding poo with one of my four points of contact. But shutting off the cerebral cortex, I’ve come to realize when the gray matter is actually running, is not too bright.

Anyway, a couple weekends ago I went up into the mountains to do a stretch of what was once one of my favorite hikes. I hadn’t been on the trail in years, but my sisters—one who is a physical therapist and the other a nurse—convinced me it would be a rollicking fun time. Besides, if I got into trouble I had an entire medical team at the ready. Although I admit midway through the 1.5-mile hike I was wishing my EMT buddy Gio was along as well as cadre of wilderness rescue experts, doctors, and a team of Sherpas to carry the mobile surgical hospital.

The reason for my trepidation? Bridges. Specifically, bouncy wooden bridges the width of my shoulders traversing vast chasms where a single misstep would plunge me over a hundred centimeters into chilly mountain streams riddled with rocks and, I presume, the decaying corpses of previous failed attempts by others with multiple sclerosis. I didn’t remember the trail having this many bridges. Hell, I didn’t remember any bridges. And seriously, what does it take to install a simple handrail? Even the bridges I crossed in the Mekong Delta had railings (granted unusable railings, as you can see, but still).

Fortunately my PT sis Karen was right behind me on each bridge crossing, uttering words of encouragement while amplifying the bridge’s unpredictable bouncy reverb that comes when more than one person crosses at a time. If I were to fall, she was going to be right there, cheering me on to fall softly, because there was absolutely nothing she could have done if I had teetered. What was I thinking?

Exactly. I was thinking about purple aster, Indian paintbrush, scarlet trumpet and… poop. Although each crossing had me tasting my left ventricle, I pressed on fully knowing it meant there would be another one exactly like it—this was an out-and-back hike. And I knew that fatigue would make the return infinitely more challenging. But as you can tell since you are reading this today, I survived. All seven bridge crossings were made successfully, some more than 30 feet long. And for you math majors out there who are concerned about the odd number (“Seven bridges, not eight, Dave?”), one crossing was over dried mud that I traversed through rather than over on the return as I neared the safety of our car’s first aid kit.

While I wouldn’t necessary advise tramping over wobbly pieces of wood missing the occasional plank, I would advise going for it at times. Meet challenges—physical, mental, whatever they may be—head on. Heck, you have MS; you don’t have to live in a bubble like that poor kid David Vetter. Just be smart about it. In my case, I rested and cooled off before each challenging section of the trail to be as fresh as possible (that also tends to clear up my eyesight, which gets iffy with heat). That said, avoid taking unnecessarily stupid risks. You know, the kind that could get you killed. I’ve had to pass on adventures, like this crazy one in Bhutan, when I couldn’t justify the gamble. But if you do roll the dice, it sure doesn’t hurt to have family members in the medical field.


The Monster Wave of Getting Diagnosed

Jeff, a friend of mine who is an expert surfer, regularly travels the world to find monster waves. In 2010 he was on a remote island in Indonesia riding in the swell of 14-footers when he got too low in the barrel and it crushed him, snapping his hip in two. Dragged onto the support boat, he survived a jarring ride to shore. But that was just the beginning. There were no paved roads and camp was a mile away. After one truck got stuck in thigh-deep mud, another came to the rescue. Unfortunately, the tow-rope snapped, forcing a team of men to carry Jeff through the thick jungle to camp, where he was set down on the facility’s lone solid surface: the dinner table.  

Fifteen hours later he was airlifted to a hospital, where doctors told him that not only was he close to death (he could have easily severed a major artery with too much movement) but that his hip needed multiple pins for him to walk again. I won’t even go into the complications, like waking up during the 5-hour surgery to the sounds of drilling or how it took five days of intense pain for doctors to realize that the epidural was inserted incorrectly. For over a year Jeff was virtually homebound and his future surfing escapades are forever on hold.* What does this tale have to do with MS? Well, on the surface, nothing—it’s just a hella-crazy story. But duck under the waves and you’ll see how this parallels those first days of getting diagnosed with multiple sclerosis.  

This wasn’t supposed to happen, I know. You weren’t prepared for that monster wave. Yeah, I’ve been there. You feel like you are drowning in an ocean of uncertainty—what does your future hold? Will you still be able to do the things you love? Will you end up in a wheelchair? Dunno, dunno, dunno. I can, though, say from experience that it’s not worth dwelling over (certainly, for gosh sakes, not when you are in bed trying to fall asleep). You’ve been hit by that wave and nothing—nothing—is going to change that. Now dry off. You’ve got one hell of a life to live… just make sure that on those dim days when you need it, that dang epidural is inserted correctly.

*UPDATE: After Jeff’s third operation, doctors finally concluded his femoral neck bone could not be saved. Eight more months were spent without a hip, requiring complete immobilization and an IV drip 24 hours a day. Two more operations followed including a full hip replacement. After being bedridden for a year, Jeff was demoralized, but he was not going to give up. His muscles totally atrophied, he spent the next year walking in chest-high water to build up enough strength to walk with a cane. But the waves called. Could he surf again? Day after day the former expert surfer watched beginners stand up on their first try—it took him four struggling months to accomplish the feat. He was not going to quit. In 2014, Jeff moved to Bali and started surfing every day. There were many times he could not get to his feet, but eventually he was catching waves on a long board, then a short board. Life has changed, but life goes on. “I still limp, I can't run, and I am in pain all the time, day and night,” Jeff says. “But I can surf, I can walk, and I am thankful for every wave… every step.”

Originally published September 17, 2010. Edited for clarity July 26, 2012. Updated in 2016.

Plan B, STAT!

I’ve come to the conclusion that having multiple sclerosis can be really annoying sometimes—I know, shocking. And the annoyance level really ratchets up in the heat of the summer. Which is why I have a framed portrait over my fireplace, oh the irony, of one Willis Haviland Carrier, the inventor of modern electrical air conditioning. (Okay, technically it’s not over my fireplace. And truth be told, it’s a digital photo conveniently stored on a Wikipedia page, but these are unimportant details to our story. Let’s move along.) Anyway, I really needed Mr. Carrier’s help the other day when my sense of adventure collided with searing temperatures in a most unexpected way.

See, I enjoy the unusual, trying new things, taking risks. So when I got an invitation for a speakeasy-style culinary dinner, I was intrigued. A multi-course French meal followed by a series of French short films at a location TBD, accessible only to those with the secret password? Count me in. Days before the event an e-mail arrived with my codeword (“bon appétit”) and directions to the private home… along with the dress code: semi formal. Wait, this is New Mexico! Dressing up here usually just means wearing your nice shorts or putting on that one baseball cap you haven't sweat through yet. I haven’t worn a suit since my sister’s wedding, and she’s been divorced for a few years. I wasn’t even sure if I remembered how to tie a tie. This was to be an adventure indeed.

As it turned out, the tie got tied and the speakeasy house was but five minutes away. All that worry for nothing, I thought. And then we arrived. “Bon appétit! “ I said, as we were shuffled to the back of a home to dramatic views of the Sandia mountains, the city of Albuquerque, and a dozen tables set for a feast. Outside. In near record 101-degree temperatures. Where we were going to sit for four hours. I looked around at the other diners, most of whom were in short-sleeve shirts, and then looked at my reflection in the home’s windows. Beads of sweat were already dotting my forehead. But boy did I look good in my suit. The undertaker won’t have to do much at all to tidy me up for my upcoming funeral. I was doomed and the credit card was charged long ago, so bailing wasn’t really an option.

“Home, STAT,” I said to my wife. I had a plan, and it involved not wearing a tie. We rushed back to our house, traded my suit for something more climate friendly, and dove into the freezer for a cooling vest, which I wore under a baggy shirt. Did it look like I was sporting body armor? Yes, but we were going to a “speakeasy”; I was just dressing for the occasion, you know, in the event of a raid. When we got back to our gathering, the appetizers were just being served and no one paid attention to the barrel-chested, short-sleeved dude with forearm crutches. And I didn’t break a sweat again all night.

When you have multiple sclerosis, you often have to go to a Plan B. That’s life with this disease. The trick is how you cope with the situationmentally you always want to have a backup plan. So if Eliot Ness crashes your party, especially one that was prepaid in full, you’ll be prepared to go out guns blazing.

Independence Day, My Ass

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….

Originally posted July 1st, 2010.


Bending the Spoon Theory

There’s a popular description of having a disability that makes its way eventually onto every multiple sclerosis discussion board on the internet: the Spoon Theory, Christine Miserandino’s personal story and analogy of what it is like to live with a disease (lupus in her case). Indeed, it is an eloquently simple description of what life often is like with multiple sclerosis and its ubiquitous fatigue.

In short, she explains to her best friend “that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to.” To demonstrate this, she grabs up a dozen spoons and tells her friend “when you are healthy you expect to have a never-ending supply of ‘spoons.’ But when you have to now plan your day, you need to know exactly how many spoons you are starting with.” Every task, whether it’s playing with your children or showering or making dinner, siphons valuable energy (or spoons). She takes her friend’s spoons as she imagines her day unfolding, confiscating them at an alarming pace (shaving, getting dressed, preparing breakfast). There are tough choices—if one chore gets done, another one doesn’t. “She needed to choose the rest of her day wisely, since when your spoons are gone, they are gone. Sometimes you can borrow against tomorrow’s spoons, but just think how hard tomorrow will be with less spoons.

And here is where the Spoon Theory gets a bit bent ala Uri Geller. Instead of having fewer spoons tomorrow, what if you could actually collect more spoons? Instead of a dozen per day, maybe 14 or 15, and then maybe 20 or even 25.

Perhaps you can. According to copious multiple sclerosis studies and research, exercise reduces fatigue in MS, in some cases dramatically. I know, it sounds counterintuitive. Exercise is hard. Exercise makes you tired. Exercise costs you precious spoons. You certainly can’t afford to waste any of them on an endeavor that on the surface accomplishes little more than making you stinky, musses your hair, and makes it feel as if a pickup packed with portly pachyderms has presciently pancaked you.

Yet that’s okay. Because the benefits are almost certainly worth the upfront costs. Exercising on a regular basis and getting fit will eventually forge new spoons for future days. Yes, it will take time to crank out a usable set of flatware. Yes, it will be challenging to learn (or get back into) a new craft. But you can do this. Give MS one helluva shot with a sledgehammer …  and become your own blacksmith—your body the anvil, your desire the furnace—and forge some new spoons.


Finding Out You May Have MS Could Be the Revolutionary Weight-Loss Solution

I have a theory. When you discover you “may” have multiple sclerosis, there are two typical reactions. a sense of relief to actually finding out what has been bugging you all these years OR TOTALLY FREAK OUT.

Having had symptoms only for a matter of months when MS was suspected in the fall of 2005, I fell into the latter category. Yup, carefree me. For three weeks I held my own pity party. And it was a rager of a party—picture a frat kegger and then toss in a fully loaded beer truck broken down in the frat house’s driveway with a sign “must unload to tow: free beer.”

It was great. In those few weeks of not eating, not drinking, not sleeping, and freaking out, I shed a full ten pounds.* Take that, South Beach!

*Results may not apply to every MSer. Eating food is recommended. Freaking out is not.

Originally published June 2006. Edited for clarity.

Les Toilettes: The French Folly

Traveling and multiple sclerosis go together like chocolate syrup and sardines. So those of us with this disease appreciate the little things that make globetrotting a little easier, like easy-to-access public toilets. Which, I discovered on a recent escape to France, virtually do not exist in a country that mandates diuretics—coffee, wine, champagne—at most meals. So I’ve come up with a handy set of rules to make it easier to navigate the bladder wars and dampen (no pun intended) your panic quotient when you’ve gotta go.
  • That cute café? The bathroom is down that narrow spiral staircase. And it might be an Indian-style toilet. If you are lucky you’ll have a grab bar so you can pull yourself off the ground after you’ve peed on your pant leg. And now you need to consume a beverage (more liquids!) as a thank you for using their marvelous facilities. 
  • Do not assume that the largest train station in Paris with dozens of tracks and thousands of visitors daily has a plethora of public bathrooms. They have three… toilets. There is always a long line and you get to pay for the privilege.
  • The vineyard-rich countryside of France is blissfully free of commercialization and such pesky things as devices that flush. Fortunately, the French love to cycle. Cyclists have to pee. They usually pee on the side of the road. Voilà!
  • Toilet seats are a luxury. Seek them out. Celebrate them.
  • You found a gas station? Great! Use caution when getting out of that car as that may turn on your I-gotta-go-now switch. They probably won’t have a toilet. And they’ll point down the way to facilities you now are guaranteed not to reach in time.
  • Notre Dame Cathedral.12 million annual visitors. 9th most visited tourist attraction in the world. 0 toilets. I am serious.
  • There are good odds you will not make it to a bathroom at least once. It’s in the MS rules. Pack accordingly and don’t beat yourself up when you have an oopsy. Heck, you are on vacation.

Now with all these issues, there are the odd restroom finds that make travel so special (in a good way). These gems make it feel as if you’ve found the lost Toilet of the Covenant. Like the hidden handicapped bathroom at Pier 2 on the Seine outside the Eiffel Tower (staff will guide you if you ask, and tuck a piece of paper in the door jamb so others will know it’s occupied—there is no lock). Or the line-free handicapped toilets tucked into corners at the Musée d’Orsay. Or the deluxe, sparkly clean bedroom-sized stalls at the Charles de Gaulle airport. No, you can’t live there, but you’ll want to.

No matter where you go in the world, you will have to, well, go. Just don’t fret about it. You are human. And with each adventure you’ll have more stories. I mean, how many people can say they’ve peed in a French mall parking lot on a sprig of a tree planted on a traffic island? Or on the banks of the Seine in the middle of Paris in broad daylight surrounded by pedestrian bridges? Or under the disapproving eyes of gargoyles at Notre Dame de Paris? Okay, that last one was a bit unfortunate. But I’m absolutely sure I’m not alone. And neither are you.


Imitating Humpty, Mr. Humpty Dumpty

In the fall of 2009 I had what I consider my first official MS fall—almost four years to the day of my first relapse. Now I’d 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 did it give me 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!

Originally published October 31, 2009. Edited for clarity.

Grocery Shopping with MS Meets Murphy’s Law

I’ve never liked that guy, Murphy, always showin’ up at the most inopportune of times in multiple sclerosis. Like last week, when I ventured out to grocery shop for a 10-person dinner party (one that catered to a) vegetarians and b) people allergic to onions, but that’s for another story). All seemed pretty darn smooth when I arrived at the store. I even got the chance to park next to an empty handicapped spot, which I always try to do if one is available—someone may need that extra access far more than I do. And then that dude showed up. Murphy. There was just one available scooter… and the battery was just about dead.

When I grocery shop these days I usually use one of the store’s Hoverounds. It saves the MS legs for needed work later in the afternoon and it prevents me from having to ask the staff to hunt down a chair for me if I bonk an hour into my shop. And that conversation always goes like this: “Chair? Why? I don’t think we have one.” I nod. “That’s okay, I’ll sit on the lettuce. It’s softer than the apples or potatoes.” A chair usually shows up rather quickly.

Of all days I really needed to save the legs, today was that day. I couldn’t wait and come back later—the rest of the afternoon was slated for mandatory cooking and dinner prep for the weekend. Worse, I had a big haul to get and Laura had just run out of allergy medicine at the peak of allergy season. So I came up with a plan. Using the near-dead scooter, I’d hit the pharmacist (located at the opposite end of the store from the fresh fruit and veggies) and then switch to a push cart and hustle. No prob, right? Wrong.

“Your prescription isn’t ready.” Fudge. The scooter was wheezing and I was at the wrong end of the store. So I plugged the scooter in at the pharmacy and waited. “The doctor hasn’t called us back, so we’ll page you when it’s ready.” Holy bat guano, Batman. So off I go back to the front of the store to drop off the electric slug only to get paged midway. Mother Mary Joseph Stalin. Turning around, I crept back to the pharmacy, plugged ‘er back in, and picked up the allergy meds. Could I make it back with the extra few minutes of bonus juice? Would I stall out in the middle of store, stranded? Should I cut my losses and just hit the beer aisle?

I finally made it back to the cart corral averaging 0.2 mph; I could have crawled faster. But I saved my leg gas for the main shop and I was ready to motor. And motor I did. It didn’t even bother me that they were out of cans of chicken broth—how does that happen?—and the first 48-oz box I picked up leaked broth all over me. (And for those wondering, “Dave, chicken broth has both a) chicken and b) onions,” don’t ask. The vegetarian makes an exception for broth and for some reason processed broth does not trigger the other’s onion allergy.)

So I swept down the aisles in blazing time, tossing items in the basket like Jordan raining threes. I finished, forgetting not a single item, and my legs still had ample power. Screw Murphy, I thought. I didn’t even have to pee. Oh, wait—I shouldn’t have thought that. The bathroom is on the total other end of the store. By the pharmacy. Murphy is such the a-hole.

“What are you doing back here, Mr. Bexfield?” I shooed off the smiley pharmacy staff as I focused on my destination. AND THAT DUDE WHO WAS ABOUT TO TAKE THE ONLY BATHROOM. “Dude!” He let me go first. Murphy, finally, had officially left the building.

I strolled back to the front, checked out with a gazillion Monopoly pieces (part of the store’s promotion), certain that one held the $100,000 grand prize. “It’s a million dollars, actually,” the clerk said. Double cool. And then I saw a woman my age with a family member (brother, husband?) who was in wheelchair unable to control it himself. “Are you playing Monopoly?” I asked. She was. I gave her my stack of tickets and walked out to my car. She soon followed me out… to her accessible van in that last handicapped space. Thanks, Murph, sometimes you aren’t so bad after all.


If You Know More About MS than Your Neuro…

UPDATED 9/16/19
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 Friends to cheer yourself up, and since there are 236 episodes in the series, you can delay coping with your new reality by watching 118 hours of the popular TV sitcom. 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.)

Buuut, since you found this post, odds are high that you have immersed yourself in Internet research on the disease, and you now think you know more about MS and its treatments than your run-of-the-mill neurologist—the one who doesn't specialize solely in MS. Oh, and if he or she is a specialist, you still probably think you know more, because, duh, you just read it. ON THE INTERNET. How can they NOT KNOW about those MS diets that reverse the disease, how disease modifying therapies are MORE DANGEROUS THAN THE DISEASE, or how [plug in cure du jour] CURES MS? And since you also now are armed with armfuls of anecdotal evidence on the disease, you have PROOF.

If that’s you, take a breath, back away from the computer slowly, and start getting back to living your life. Seriously. It's not healthy. And to paraphrase Obi Wan, These are not the answers you are looking for. 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! Don’t worry; I’ll keep you updated on any excitement that comes along. You've got a big, fat, rich life to live, and spending it all on your phone or computer isn't helping. 

Don’t Set the Puppy on Fire

We’ve all been there—getting off the couch to wander into the kitchen to grab that thing. Or do that thing. Or find that thing. Or put away that thing. Wait, now why the hell did I go into the kitchen again? Don’t worry, that’s probably not your MS talking, that’s just life. Now when you get back to the couch and suddenly remember why you went into the kitchen in the first place, then go back to the kitchen focused on completing your once wayward mission… and you forget again. That might be your multiple sclerosis.

Cognitive issues with MS are maddening. I know you’re smart. You know you’re smart. But this disease doesn’t care if you won the science fair in 6th grade or aced your SATs or have a PhD in economics along with an MBA from Wharton. As many as two thirds of people with MS have some level of cognitive impairment and it often goes beyond forgetting a word or the title of a movie you saw last month. Attention spans can wane, concentrating can be challenging—even tiring. And multitasking may be virtually impossible, especially with even minor distractions. Worse, these issues tend to creep up in MS like receding hairlines, high school reunions, and sequels to Pirates of the Caribbean. It’s not your fault. It’s Johnny Depp’s fault and, well, it’s the progressive nature of this disease.

When your brain gets fuzzy, you can laugh. Or cry. Or heck, do both. You put the cereal in the fridge? Laugh. Milk in the pantry? Cry (it was a whole gallon!). Beer in the freezer? Laugh… then cry after it explodes. But better still, be more deliberate, write yourself reminders, set timers with Post-Its, and don’t beat yourself up when you do something silly. As a story I recently received from a fellow active MSer succinctly illustrates, sometimes you just have to go with the flow….

“Tonight I had such an adventure cooking a very simple meal of spaghetti—Ragu sauce and ground beef with pre-mixed spaghetti seasoning. First I set a paper towel on fire. Then I melted a spoon. Then I forgot to heat up the sauce (thought something was missing but didn't know what), so I tried to heat it fast on high without a lid and it splattered all over. Then I dropped part my meal (a small part) on the floor making a big spaghetti sauce stain on the carpet. But the paper towel part had to be the best part. Instead of trying to smother the flames with a pot or something (I couldn't think what I should do) I carried it over to the sink making the flames bigger. Fortunately I didn't burn my fingers (close), or set the puppy [at left] or the house on fire or anything else on fire.”

To counter cognitive issues, it helps to realize that overdoing it (walking the dog before dinner) or getting overheated (cooking in a warm kitchen) or being over stimulated (doing several tasks quickly) can amp up your cog fog. The more you understand your triggers, the better you can cope with brain farts. And if you still have a mental poofer, do what I do: blame it on the dog! Just don’t set the puppy aflame or you’ll totally blow your alibi.


Pushing the MS limits in Morocco

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. In late 2008 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 could those days … and I got a memory that will be with me until my last breath.

Originally published January 30, 2009. Edited for clarity. 

Yo, Pal, Gotta Permit???

On a recent late fall trip to Wisconsin, my wife and I had grand plans to go out to dinner to a nice restaurant near the Madison state capitol. As we were circling the capitol—parking is notoriously challenging near the statehouse—a handicapped parking space opened up just steps away from the restaurant’s front door (and a scarce few minutes away from our reservation time). What a perfect start to what was surely going to be a memorable evening.

That is, until the car in front of us suddenly veered over into the precious spot. And a college-aged driver bounded out of the car with nothing hung on his rearview mirror. Really? It all happened so fast I didn’t even realize that I had rolled down my window to holler at the guy. 

“Yo, pal, you gotta permit?” I yelled out of the car window into the frosty night, clearly interrupting his Chariots of Fire reenactment. He stopped mid sprint, already 20 yards from his vehicle.

“Uh, no, but I was only running in for a just sec…” His voice trailed off as if waiting for approval. Waiting for me to say, “No problem dude, we’ll idle next to your car for 10 minutes and keep an eye out for any cops. If it looks like you are going to get busted, I’ll throw my placard on your windshield and mingle around your car until you return. Take your time!”

And then my brain said something else. “I would love to run anywhere for ‘just a second.’ Think about that. You don’t ever want my disease. You don’t ever want to need that handicapped placard. You don’t ever want to be the guy who misses an important appointment (or a fun date) because a total inconsiderate lazy bastard like you took the parking spot he needed. Karma is a bitch, my friend. Move your vehicle or I’ll get it moved for you. Trust me—don’t make my gimpy ass get out of my car to beat you silly with my forearm crutches.”

Fortunately my vocal cords didn’t listen to my brain. They just said, “Sorry.” I shrugged my shoulders and held up my blue placard. He moved. We parked. And my wife and I had a magical evening, complete with the best mac-n-cheese imaginable … without me even having to open up a big ole can of whup-ass.


Snowboarding with a “bloody disease”

Tomorrow, January 28, 2012, I get back on the ski slopes for the first time since April of 2009. But this time I’ll be going the adaptive route—first on a sit bi-ski (tethered to mindful instructors) and then, as I get a feel for the snow, a sit mono-ski (no tether, just worried instructors waiting to right me after a crash). Maybe as the season progresses, maybe, I’ll try going solo on my snowboard just for grins on the easy slopes. That’ll be as challenging mentally as it is physically.

See, I used to be an expert, double-black diamond snowboarder. For years I was hitting the steeps at Squaw Valley, going off-piste in Austria, powder surfing in the Canadian Rockies, and parachuting down the verticals of Colorado, New Mexico and Utah. After getting diagnosed in 2005, my snowboarding took a hit. Grrr. I eventually had to give up moguls—they were just too taxing. As the 2008/09 ski and snowboard season loomed, I knew my skills* were on the down slope. Now I could have sat around and cried in my beer, but what would that accomplish—other than watering down perfectly good beer? So I went for it… and I got in my first runs of that season in September on the other side of the world in gorgeous New Zealand (aka, Middle-earth).

It started out a disaster, as I was able to barely clunk down the hill. (Picture a drunken sailor … who walks the plank, plank breaks, he washes ashore on some remote island in the Pacific—saved by said plank—and then shockingly ends up at the top of the Remarkables ski area, tucked into the mountain range shown above, on a snow-slicked blue run. Truly a bender of benders. Still drunk, he straps the plank to his feet and tries to board. That’s about what it was like.) But my wife said to keep going and to stop my blubbering about looking like a drunken sailor. 

Eventually my legs cooperated, my brain remembered, and soon I was sailing again. Well, sort of. Getting to the lift was the hardest part. On one lift that served blue and black terrain only, I asked the lifties to slow ‘er down so I could skate out. Concerned they were dealing with a clueless beginner from the US who was about to get in waaay over his head, they shouted to me, “Why?” “Because I have a bloody disease,” I yelled back. The lift slowed down.

Am I nervous about tomorrow? Yeah. Am I excited? Hell yeah! With this disease—this bloody disease—sometimes you just have to roll with the punches, no matter how much they sting.

*I cannot help but think of Napoleon Dynamite whenever I use the word “skills.” And actually, yes, I do have some rudimentary numchuck skills. Not very practical, unfortunately. 

Originally published in part January 4th, 2008. Edited for clarity and expanded.