Showing posts with label Beer. Show all posts
Showing posts with label Beer. Show all posts

Friday, April 25, 2014

2014 MS Influencer Summit

It was clear the moment I opened the welcome bag that the marketing and communication representatives at EMD Serono and Pfizer had done their research and knew the secret key to endearing themselves to MS bloggers: feed us. Contents of said welcome bag: Utz Pretzel Stix (1 package), Chips Ahoy! cookies (4), Nutter Butter cookies (4), Peanut M&Ms Fun Size (4 packages), Club & Cheddar Sandwich Crackers (6), Cheddar Goldfish (1 package), Oreos (6), and for the appearance of health, one Simply Balanced fruit and nut bar and two packages of Natural Almonds (unsalted and unroasted!). The only two things absent from the welcome pack of my dreams? A six pack of craft beer and a bag of Cheetos. Such a missed opportunity.

Earlier this month my wife and I ventured to EMD’s headquarters outside of Boston for a fully sponsored trip—travel, lodging, and food provided, along with a small stipend—for their 2014 “MS Influencer” Summit. Invited to provide their brainpower in improving EMD's outreach to the MS community: nine respected “influencers” along with a single goofball rabble-rouser, one who organizers no doubt felt at any given moment would stuff the end of a metal fork into an electrical outlet. Fears were confirmed when during a tour of their facility, said misfit mentioned how excited he was … to try some free product samples. Priceless is one way to describe the look on their faces. (“Mortified” might be another.)

I guess I shouldn’t question why I was the only one with a plastic fork. As for the influencers with access to traditional flatware, they included my new (and dear) friends blogger Nicole Lemelle (www.mynewnormals.com), writer Lisa Emrich (www.brassandivory.org), and author Jon Chandonnet (www.jonchandonnet.com). The other six silverware users all have equally powerful social media resumes, many of whom you may recognize: author Debbi Petrina (www.debbiems.com), bodybuilder/author David Lyons (www.msfitnesschallenge.com), humorist/author Yvonne deSousa (www.yvonnedesousa.com), advocate Laura Kolaczkowski (http://insidemystory.com/), blogger Lisa Dasis (www.mslisasays.com), and some newsy viewsy dude named Stuart Schlossman (www.wwwmsviewsandrelatednews.blogspot.com). We all got to break bread together the night before the summit (note: a couple hours after getting our food-filled welcome bags) to exchange both friendly hugs and audible gasps when discovering one’s website was completely unfamiliar to another.

Now I could go into exhaustive details about our summit, which addressed a number of topics and included EMD Serono leadership at the highest levels, but I did sign something that resembled a nondisclosure-or-we’ll-sue-your-pants-off agreement. And after wearing pants all winter, trust me, you don’t want to see my legs, which are so white that if I sprawled out on a highway, pilots might mistake them for runway markings. Oh, I exaggerate slightly the agreement I signed (I seriously doubt they want my pants), but all of us bloggers did agree to keep particular proprietary information discussed private. So I'll leave out the private parts so to speak. Hmm, perhaps I should have worded that differently....

The first big surprise: nearly half of the bloggers have a written a book. Now I’ve been writing professionally for more than two decades, yet I can count the number of books I’ve written on a closed fist. For years I’ve been making excuses to my wife Laura (I have this disease, blah, blah) and being surrounded by book authors with MS was only proving my wife righter and righter by the minute. The second big surprise: EMD Serono and Pfizer took our gathering—even yours truly—very seriously. There was a detailed preprinted program, they listened intently to our discussions, and by my count nearly two dozen staffers were participating in some facet in our summit. When they said we would meet senior leadership, I was expecting perhaps directors of their social media communications department and maybe a costumed mascot of the drug company. I was wrong. We were given unprecedented access to the top. The tippy top.

For a full hour during lunch, we listened to—and questioned—EMD Serono’s president and managing director Paris Panayiotopoulos, the head of the MS platform in global research and early development Mark Shearman, PhD, and the head of US medical affairs and neurodegenerative diseases Fernando Dangond, MD, FAAN, MB (no clue what all those letters mean, but I’m assuming important stuff). I was well prepared with detailed and specific questions—thanks in part to the help of fellow members of ActiveMSers—inquiring about the status of their present MS research. You can read about the research here, released at the American Academy of Neurology annual meeting two weeks after our gathering. The panel also addressed their ongoing efforts in seeking treatments for progressive forms of MS and EMD’s dedication of resources to R&D for this particularly fickle disease path. I was ready to pepper in a few more Qs, but when I made eye contact with the vice president of US communications Lisa Buffington, who after the morning session was more than familiar with my brand of humor, it was clear that she felt that a) the Q&A session had gone extremely well to that point and b) maybe she should end the session before Dave misbehaves in front of the president of the company on her watch. Admittedly, she was probably right.

Case in point: during our tour earlier that day of EMD Serono’s patient helpline facility, MS LifeLines (www.MSLifeLines.com), we got to meet—and question—a number of staffers, from reimbursement/copay experts to certified MS nurse specialists. When one of the nurses, who had spent countless hours to become certified, was describing the lengthy process, some wiseacre piped, “So basically you had to complete a three question true-or-false quiz.” Nurse, you have been officially introduced to Dave humor. Sorry.

After lunch, the blogging team was presented with a private sneak preview of EMD Serono’s upcoming marketing and communication initiatives. And now I’m being reminded at this time by Laura to keep my pants on, as she does not own a pair of welding glasses, much less a welding helmet. Alas, I can’t talk specifics about their forthcoming social media efforts. But I can say it should serve the MS community well.

Toward the end of the summit, which by all accounts went well for EMD Serono/Pfizer and the bloggers, the organizers asked us what gave us strength—to write down a few empowering words. They then took our words and transcribed them on a banner for our group photo. I seriously doubt any of you can guess all five of mine. And if you detected a whiff of sarcasm in that last sentence, odds are good you won’t miss a-one. (Well, maybe one. More than a few of my fellow bloggers think like me, the nerve.)

Monday, February 24, 2014

Timing is Everything

I recently came across an interesting factoid of nature: that the average mammal, from mouse to elephant, takes about 21 seconds to urinate. Clearly I am not the average mammal, as it often takes me 21 seconds just to unbutton my jeans with my bumbly MS fingers. And then, if you permit me to discuss the 16th letter of the alphabet a bit more candidly, it takes minutes for me to fully empty my bladder. Poor Laura could get through not one, but two sections of the New York Times before I’m done tinkling. Admittedly, it is a touch embarrassing when friends and family wander back into restrooms to “make sure I was okay”—as if I might have forgotten to lift the toilet seat and gotten my ass wedged into the bowl or needed a new Sharpie for all the graffiti I was scribbling onto the stall walls—but that’s life with multiple sclerosis. Docs call it urinary retention and hesitancy. I’ve gotten used to it. But that doesn’t make it any easier. And after a recent trip to Northern Europe, I discovered that having a rather slow flow can make using the restroom a lot more memorable.
Take this pristine handicapped bathroom at Oslo’s airport. Look at how brilliantly clean it is—sunglasses should be mandatory. Heck, a heart surgeon could do a triple bypass in here without risk of patient infection. There’s a good reason why. If you look on the wall, you’ll see a digital “hygiene monitor” with a countdown of the number of minutes left before the next inspection. Exactly. I had precisely 55 minutes left to pee before a coordinated team of uniformed Norwegian inspectors wearing orange jumpsuits barged through the door to clean the very toilet I was sitting on. It’s challenging enough to pee when you’ve got a disease that affects the bladder and how swiftly it empties. But add a timer?! Now I was on the clock, and we all know how easy it is to pee under pressure when you have MS. Thank god I made it out in time.
But I wasn’t so lucky in Hamburg. When I started to trudge down a long flight of stairs at one German restaurant to get to the facilities (bathrooms are often downstairs in Europe), the wait staff ushered me instead around the corner to a handicapped restroom that was being blocked by boxes and brooms. No wonder I had missed it! Upon entering the bathroom, it became clearly apparent that the folks tending to this toilet were worried about gimpy people with loose stools. There were 16 rolls of toilet paper within arm’s reach of the potty. But if you were to run through those (yikes, one of those days), you had a full pallet of TP in the corner. If felt like I was taking a leak in aisle 16 of Costco. While I was laughing to myself about the ungodly amount of paper products at my disposal, I heard boxes moving, brooms being propped against my door. I had taken too long—I was being entombed. Quickly I assessed the situation: I had access to water, so I could live for weeks, and I had a lifetime supply of Charmin. But horrors, no German beer. It was indeed a desperate situation, so escape was mandatory. I gingerly pushed open the door and the result was as predictable as the sunrise. I made such a racket that the restaurant goers that afternoon probably are still talking about it to this day.
It couldn’t get much crazier, could it? Oh, don’t dare underestimate me. Just ask the poor residents of Copenhagen. In the heart of the Danish city, there is a large public unisex bathroom that is manned by a couple of attendants who keep the facility in ship shape and direct cross-legged visitors to open stalls. When they saw gimpy Dave, though, they pointed to a special door. With the turn of a key, the automated sliding door quickly whooshed open like I was on the set of Star Trek. Totally trick. Instructed that the door closes by itself, I wandered into the large, handicapped accessible bathroom and waited for the door to slowly track back into a closed position. (It’s important to note that the closing of the door is much slower, probably so it doesn’t slice a wheelchair user in two.) In any event, I was proceeding with the business at hand when I realized that I technically hadn’t locked the door. Heck, the door itself didn’t even look fully closed. I then determined that locking said door was the most prudent course of action lest the attendant forget about me and open the door while I was midstream. Fortunately, there on the wall, was a button with a key. The lock button. So with pants and underwear around my ankles, I waddled with my gimpy MS legs over to the lock button to properly lock the door. Only when I pressed the lock button, it dawned on me that it might not be such a button. WHOOSH. The door flew open, and suddenly I wasn’t on the set of Star Trek. Or Star Wars. Or Battlestar Galactica. I was in a horror movie taking part in the obligatory naked scene as I was suddenly flashing all of Copenhagen. I waddled as quickly as one can waddle with MS to the corner of the bathroom, and proceeded to then moon all of Copenhagen, while waiting for the door to slowly—ever so slowly—close. God only knows how many lives I’ve scarred in Denmark. I fear future Hans Christian Andersens are no longer penning the next Little Mermaid but instead writing The Naked Dude. Jiminy crickets.
So is there a lesson to these three tales? Not really. Just pee faster (no pressure). But with multiple sclerosis, good luck with that.

Thursday, January 30, 2014

2014 MS Blogger Summit, Day 1

When the marketing folks at Novartis (makers of Gilenya) conjured up an MS Blogger Summit, inviting a group of nine diverse posters for an all-expenses paid trip to the sleepy climes of Morristown, NJ, they probably had a preconceived idea of how the event would unfold--engaging in discussions about the communication needs of the MS online community while getting candid feedback on some of their social media efforts. And it would all start with a casual, friendly welcome dinner the night before, just steps away from the hotel. However, they didn’t count on a few things: single digit temperatures, piles of snow, icy sidewalks and a certain smartass blogger.

“I sure hope the newspaper headline tomorrow doesn’t read ‘Bloggers with MS Tragically Perish on Icy Jersey Streets. Novartis Reps: Our Bad.’”
Dave expresses concern, while Nicole smiles in the face of danger.

I often voice my opinion with tongue firmly in cheek, but there is usually just enough truth for one to take pause. And after meeting me only minutes earlier, and not fully adjusted to my candor, the representatives from Novartis likely were mortified. A gaggle of MSers, including one using a scooter and another forearm crutches (yours truly), were trying to walk to a restaurant a scant 269 feet away from the hotel. The problem? Our path was blocked by berms of fresh snow, requiring us to walk down the street to the crosswalk ... that was still chockfull of snow. (For the record, the temperature that night plummeted to a low of one degree, and let’s not even discuss the wind chill.) I was merely pointing out the obvious, and it wasn’t going to get any safer. Wine and beer was going to be served with dinner. To people with MS. Who may have balance issues. A perfect storm was brewing.

Around the dinner table were individuals with a delightful mix of talent: blogger superstars Nicole Lemelle (www.mynewnormals.com) and Lisa Emrich (www.brassandivory.org and www.msbloggers.com), author Jon Chandonnet (http://jonchandonnet.com/blog/), clinical trial advocate Jeri Burtchell (www.partnersinresearch.org), longtime poster Joan Wheeler (www.shortinthecord.blogspot.com), community advocate Jodi (www.jodibeansblog.com), and wise-cracking, heal-wearing Jamia Crockett (www.mymsheels.com). My wife Laura and Nicole’s engaging husband Tommy joined in as well. Only 23-year old Matt Allen (www.mattsms.com), who was arriving later that night, was absent.

To say we all bonded was an understatement. After all, each of us realized this may be our final meal given the conditions outside. At least I would have an opportunity to toast one last year of marriage to my wife Laura; it was our 21st anniversary that night. And with the New York/New Jersey area trailing only the West Coast in wineries, it was bound to to be a special toast.

“We have red--and we have white.” Our waiter was holding up two magnums... of Yellow Tail. Many New Jersey restaurants have a BYOB policy and Novartis, in a clear effort to wow bloggers with frugality, procured the Australian wine best known for being served free at office get-togethers. It’s not to say I won’t drink YT, and indeed I even have a special bottle in my closet. From 2006. I haven’t found anyone to take it off my hands in eight years. I suddenly felt more in a beer mood, and I wasn’t shy about saying so. About this time the poor folks at Novartis were no doubt rethinking the wisdom of inviting me.

They shouldn’t have. I give everyone I like personally a hard time, even folks I’ve barely met. To their credit, it was because of their efforts and careful vetting of bloggers that the evening unfolded enchantingly (complete, yes, with Hopfish IPA from New Jersey’s own Flying Fish Brewery). Indeed, we were all having such a wonderful time, none of us wanted the evening to end, and not just because of the impending harrowing walk home.

We needn’t have worried. Safety being a (newfound) priority, a warm ride was waiting for us in front of the restaurant. Due to liability reasons, Novartis had to use a car service--no personal chauffeuring allowed--and there were few options available at a moment’s notice. So a stretch limousine drove us the .05 miles to the hotel front entrance. Fourteen seconds. Novartis wanted to make sure that their first-ever MS blogger summit the following day was going to go off without a hitch ... and with all attendees fully, and safely, accounted for. Spoiler alert: they succeeded.

Thursday, November 14, 2013

Managing MS Endurance


This past weekend while hiking in Sedona, I walked more in a single day than I had since 2009—2.9 miles, over 6,200 gimpy steps. Of course I realize this might not sound like much, especially if you do the math. I mean, it would take me nine full record-setting days to accomplish a single marathon, which apparently any remotely athletic Kenyan can run in under three hours. But with multiple sclerosis doing a number on my legs, it’s cause for a minor celebration, like a Snoopy happy dance (sans dance).
Even though these days I'm able to walk for up to 75 minutes straight with my forearm crutches, my legs afterward turn into floppy rubber chickens—the kind you’d see in an old comedy skit. These two appendages that presumably make me a biped are beyond hosed for the rest of the day. The type of hosing that makes you debate whether or not you should have a beer post epic hike. Yes, a beer would be tasty. Yes, a beer would be frosty cold and a just reward. And yes, a beer would make you eventually have to pee, necessitating you to get off the darn couch and walk to the bathroom. On rubber chicken legs. Honestly, at those times dehydration never sounded so good.
After hiking to exhaustion a few times, I figured I had two options if I wanted to maintain healthy levels of hydration and still enjoy cerveza. One, relocate the hall bath so that it was within arm’s length of the couch or two, find a way to avoid rubber chicken legs. With my wife Laura nixing option one in the clearest of terms (or any variation of option one, aka empty Gatorade bottle), I was left with managing my endurance more strategically.
So to prevent blowing up my thighs just to prove, ostensibly to myself, that I can still motor for an hour at a time (Oh, Dave, you are so strong and manly even with your disease), I swallowed that ego deflation pill and figured out how to dole out my energy output: Force myself to take regular breaks.
Now when I hike, my wife/Sherpa unfolds a small camping stool every 15 minutes and I take a 3-5 minute break. Even if I’m feeling fresh. Even if there is a great vista point a few minutes up the trail. Even if there is a hiker doling out free microbrewed beer a switchback ahead. (Thankfully that particular dilemma has never materialized.) These regular, scheduled breaks help to keep the legs from bonking and to avoid the inevitable implosion at the end of a long (for me) hike.
So how did I manage the record 2.9 miles that day? Deliberately and patiently. I hiked a little over a mile in the morning (3300 steps), and then another mile in the late afternoon around sunset—both hikes in cooler weather as I avoided the midday heat. In between I managed to add nearly another mile strolling around seeking food, shelter, and toilets. Again, no marathon sessions, just steady plodding.
With this disease, we all desperately want to be the hare, to prove to ourselves we aren’t that disabled, we aren’t that restricted by our multiple sclerosis. But as Aesop’s fable dutifully preaches, it’s often the tortoise that enjoys the spoils … and gets to celebrate with a happy dance, albeit a slow one.

Thursday, September 20, 2012

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.

Monday, July 2, 2012

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.

Wednesday, May 30, 2012

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.

Thursday, April 5, 2012

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.

Wednesday, March 14, 2012

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.

Thursday, September 8, 2011

Staring a multiple sclerosis relapse in the face... and blinking


It took two and half years from my first attack, which numbed the entire right side of my body in the fall of 2005, for the second relapse to strike. With relapse remitting multiple sclerosis, that second attack was almost certainly going to happen. So it was odd that I didn’t see it coming in March of 2008. I had just snowboarded a full day in Telluride. I went shoe shoeing for two hours the following day (picture of me and my wife Laura at left from that day). I was guessing I must have overdid it. That's all.

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 slowly rolled in, each swell eroded my confidence. I wasn’t prepared mentally. I guess who really is?

A couple nights later when Laura was away, my right leg screaming at me, I realized I didn’t have the strength to stand and do a measly few dinner 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 following 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 was back to my relative “normal” self—the burning was gone and most of my strength had returned. Even though I put on airs of nothing-gets-me-down super ActiveMSer guy, my kryptonite experience in the kitchen—which my wife heard about for the first time reading this blog (sorry honey)—served 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.

Originally published March 7, 2008. Edited for clarity.