Tuesday, September 12, 2017

Banish Cog Fog

This MS news will knock you off your feet.
By the end of this blog post, some of you are really going to hate me. I won’t take it personally. After all, there is some good news with the bad news. Sorta like hearing that you get free hot dogs (yeah!) … but that you have to eat a dozen of them, buns and all, in ten minutes. Clearly, if your name is not Joey Chestnut (his record is 70), you might be in big trouble. And if you can manage to gag them all down, it’s gonna hurt bigly.

Long story short, last month more research was released investigating the benefits of high intensity interval training (HIIT) and multiple sclerosis. In the randomized clinical trial, MS researchers pitted high intensity cardio exercise (3x per week for 20 minutes with five 3-minute exercise intervals at 80% of peak oxygen uptake) against a traditional exercise program (5x per week for 30 minutes at a constant 65% effort).

Some of the results were predictable. Both parties, 60 MS volunteers in total, saw “significant” benefit with executive functions, even though the trial was only three weeks long. Fantastic! But then researchers found that the benefits of the two exercise programs diverged dramatically. Compared to conventional training, only HIIT “significantly improved verbal memory” among participants.

You're gonna have to sweat.
(Additionally, “secondary outcomes indicated significant improvements in peak oxygen uptake—VO2-peak—and a significant reduction in matrix metalloproteinases—MMP-2” also in the HIIT group only. I would need to go to med school to find out exactly what this all means, but it sounds hella promising even if I don’t know how to pronounce it.)

How many approved medications are out there to improve cognitive performance in MS? Zero. How many dietary supplements have been shown to aid cognition in MSers? Zero. How many types of exercise routines have been shown—in study after study after study—to reduce cog fog in MS? One.

And this is where the total suckage of this post settles into focus. Brisk walking, cleaning your house, yoga, mowing your lawn, striding on your elliptical, Sunday bike rides with your kids, leisurely laps in the pool, even spirited bedroom escapades (go crazy, gang!) are all fine and dandy for your health and your MS. Do these activities. But unless you are seriously rocking the cardio, none of these efforts are going to significantly improve or protect your cognitive function with this disease.

Channel your favorite GOT bad ass.
As most of you are aware, cognitive issues are among the most disabling of all MS symptoms (along with fatigue, which researchers have found may also decrease with HIIT, but that is for another post). Problems with memory, attention, comprehension, reasoning, decision making, and more can be devastating and not only can lead to a forced early retirement, but also can affect relationships, the ability to drive safely, or the capacity to follow all the characters and plotlines in Game of Thrones. (Okay, trying to put all the pieces together in GOT is mostly hopeless no matter how well your brain works…I just threw that in for a test.)

Now before you charge forward and embark on a serious HIIT routine, talk to your doctor or neuro first. Better yet, also see a trainer and get hands-on instruction. When you do this, you need to do it right. And know that it is not going to be easy, but at least each session is going to be over with fast.

Jump in with abandon. No regrets.
Keeping your brain healthy is a big deal. No, a huge deal. Wait, wait, more of a HUGE FRIGGIN MEGA DEAL. And you have the power to do something about it, a rarity with this disease when many of our arrows, frustratingly, seem to fall just short. Take advantage of this opportunity. Don’t delay. Jump in and get started. You and that magnificent brain of yours will not regret it.

Monday, August 7, 2017

Stop Comparing

The other day I was out cranking it on the bike trail. It wasn’t an epic ride—the 20 mile mark still manages to elude me—but I put in a solid 13 miles over a couple of hours, decently impressive on an arm trike in 90-degree heat. And then I ran into Beth. You know, that Beth.

“Dave!” It was Beth Ulibarri, aka @MilesAndTrials, aka Ironman Beth. She also happens to be a fellow active MSer, only with a bit more emphasis on the “active” part. We all know of Beths, those absolute studs in the MS world that defy the disease with an athletic prowess that impresses even the pros (she has trained with our resident pro triathlete Kelly Williamson).

I asked how her ride had been and if she had logged a few miles that morning. “A few.” Like 90 in just under 5 hours. She was training on her Felt B12 TT carbon fiber bike (while decked out in her sponsored Klean kit) for the upcoming Ironman Lake Placid, a 2.4 mile swim, 112 mile bike and 26.2 mile run. (Update: She finished her fourth Ironman in 12:09 and set a new PR! Daaamn.)

Now, I could have looked down at my Craig’s List clunky trike with seven gears and felt jealousy. Or moped because on the best of days, I was putting in a fraction of the miles Beth logs JUST TO GET WARMED UP. But that’s a fool’s errand when you have an unpredictable disease like multiple sclerosis, one that affects each person wildly differently.

It’s so tempting to compare yourself with others—the healthy, the diseased, even the “old you.” Don’t dare fall into this trap. Don’t compare yourself to Beth or, for that matter, to me. Do what you can do. Today. And the next time out, if your goal is to improve, strive to do it better. If it is to maintain, then attempt to match it. If it is to just try to do something healthy, then try. With all due respect to Yoda, it’s okay to just try.

Still bummed? Then remind yourself about Facebook. You know, when you see the posts of friends who are eating THE BEST MEAL EVER or doing THE COOLEST THING EVER. Sounds like they are having more fun than you, awwwe, sad face. But remember, those same friends are not going to post about the ungodly amount of diarrhea they got after that 5-star meal or that they permanently lost 10 percent of their hearing because they were too close to the stage when they got that high-five from Ke$ha (oh wait, she goes by just Kesha now). They probably also got food poisoning after eating a hot dog at the concert, had an unfortunate “accident” in the car on the drive home, and then were so distracted that they got into a fender-bender. (Imagine exchanging insurance information after that.)

See what I’m saying? Stop with the measuring sticks. Be inspired by others with this disease and then do what you can do. Today. And then tomorrow? Do what you can do.

Monday, July 3, 2017

Make it a Double

As I looked out my cabin window at the feisty steel-gray seas of the Aegean, I knew the day was going to be challenging. Our ship had anchored in the caldera harbor of Santorini, Greece, consistently voted one of the world’s most beautiful islands by travel magazines. Oh so beautiful, they gush. Those white-washed blue domed churches are a must see, they urge. But travel magazines don’t have a category for world’s most inaccessible islands for those with multiple sclerosis. I know, right? A little warning would have been appreciated.

The very definition of not-glassy-seas.
The first sign of trouble appeared before I even left the ship. Santorini is a tender port for cruise ships, meaning you have to board smaller boats to get ashore. While cruise ship tenders tend to sync decently with their own ships, Greece requires ships to use their tenders, which sync not at all. This fact is compounded when the seas are not glassy flat.

As I stood waiting to board the tender, watching it bob up and down like a whack-a-mole game run amok, I naïvely thought “totally doable.” And then I tried to get on, putting my forearm crutches on the lip of the vessel, which promptly dropped several feet. Forearm crutches, it turns out, offer little support when they are both in midair. To avoid becoming fish food, this was going to require perfect timing, luck, and Scotch. Lots of Scotch.

The zig-zag climb up to Fira.
After what felt like a minute of false starts listening to instructions from the crew—“go now, wait don’t go, okay now, nope hold on, NOW NOW”—four large men helped me clamor down into the tender as fellow passengers watched on. I’ve never seen eyes so large in my life. I broke the tension the only way I knew how.

“Well, I guess we’re moving to Santorini, because I’m never getting out of this thing.” I was only half joking. Maybe a quarter joking. Fortunately, large and muscled Greek longshoremen were waiting at the dock to lift me out whether or not I wanted to permanently reside on the tender. Probably a good thing in the long run as it lacked restroom facilities and Laura wasn’t thrilled with the décor made up primarily of uncomfortable seats (my wife is so nit-picky). Little did I know the fun was just beginning.

To get to any of the towns in Santorini, which are all perched on the cliffs 800 meters above the bay, you have to go up the side of said 800-meter cliff. There are three ways to do this: take a donkey up 600+ steep and slippery steps holding on for dear life, climb the 600+ steep and slippery steps while avoiding donkeys and donkey poo, or take the cable car. Option C seemed most practical.

This is steeper than it looks.
After taking an elevator (reserved for the disabled), then a wheelchair lift (restricted to wheelchair users), I arrived at a cable car that was not wheelchair accessible. Really. To get on, you had to fold your wheelchair, duck down, and slink inside. Finally, after nearly an hour—tender, elevator, lift, cable car—we arrived in Fira, pronounced (appropriately) FEAR-ah. Why appropriately? See, the narrow, cobblestoned streets in Fira primarily go in two directions: straight up and straight down. This is a challenge for many tourists (I overheard one say he was going to die, and I believed him), but it is especially challenging in a wheelchair. At least there were no steps. But there were also no blue-domed churches, either. Those were in the town of Oia, known as the “eagle’s nest” or as, loosely translated by me, “town of many friggin steps.”

Oh crud. Fortunately our guide assured us the main, albeit narrow, marble pedestrian thoroughfare through town was flat with no steps. Brilliant! Except for the minor complication that it was neither flat nor step free. Ah, details, details. I was going to see those damn blue-dome churches one way or another after this escapade.

Busted? Really?
After playing tourist dodgeball, walking a bit and rolling a bit, there they were. Blue. Domed. Churches. Now, I could say that the trials and tribulations of getting to this perch were not worth the effort, but as the morning cloud cover had burned off and the skies turned an aching blue, the sight was every bit as pretty as advertised. This was worth it and I had the photos to prove it. Then reality sunk in. I still had to make it back to the ship in one piece. Santorini, that little devil, wasn’t done messing with me.

Naturally, almost predictably, in the few hours between our morning ascension, the wheelchair lift at the cable car had broken down. Could I do steps? the attendant asked. Oh yeah, I said (pronounced conveniently like Oia). Finally, epically, all that was left was the tender ride. After “boarding” the small boat as safely as one could with balance and wonky legs, knuckles began to whiten, faces began to ashen. All of my fellow passengers were genuinely concerned for my safety. Me? I was just calmly freaking out.

A small step for a man,
a giant leap for an MSer.
As the tender lined up with our ship, my shoulder felt many comforting pats as mumbles of Good luck and Godspeed rippled through the cabin. I am not joking. Finally it was just me and Laura on the tender as it bobbed fitfully. I climbed up the stairs and went for it. Nope. Then went for it again. Nope. The step was nearly three feet—we had to time my exit with the bob. Finally, and with a huge heave from the crew, I made it to the ship’s platform. Almost. My right foot, the weak and stubborn one, was stuck on the lip of the ship as the bobbing tender threatened to crush it against the side of the ship. I knew it was getting serious when the crew’s eyes began to widen, apparently the theme for the day. Their shouting also gave away their concern. And then… Laura reached up and popped my foot loose. I made it back aboard.

I saw my blue domes. Hot diggity!
Every adventure one takes with MS is going to deliver challenges, that’s a given. And some will be bigger than others. When that happens—when that challenge looks more like a mountain than a molehill—you are left with only question: how does one rise to meet such a challenge? For me, rising to such an occasion in Santorini was a bit more literal and included a fortuitous bob and four big dudes, but whatever. I survived to enjoy another day, and another day when I could enjoy my beloved beer and Cheetos. But today, this day, I was going to have a Scotch. Make that a double.

Tuesday, June 13, 2017

My Big Fat Greek Odyssey

Sometimes travelers have it a bit rough. Like that Odysseus dude, who took 10 years to return to Greece after the Trojan war, enduring cyclops attacks, deadly whirlpools, six-headed monsters, seductive sirens, blah, blah, blah. Okay, so he had it more than a little rough. But the one thing he didn’t have: multiple sclerosis. Now that would have really cemented his legacy.

Well, last month I found myself for the first time in Greece, often called the cradle of Western civilization. And, completely unintentionally, I also found myself trying to one-up Homer’s hero in terms of overcoming challenges. How do I always, always get myself into these situations?

When you are in Athens, it is pretty much a requirement to go to the Acropolis, the ancient citadel featuring the legendary Parthenon. And for 99.9% of the visitors, there is one way to the top of the 500-ft high rock outcropping: a steep, cobblestone path that is decidedly unfriendly to the disabled. But for those using a wheelchair or for those with official evidence of a disability (e.g., a handicap placard with your photo), there is another way to the top: An elevator, which was installed prior to the 2004 Olympic games.

But would Odysseus stoop to using an elevator? Oh hell no. I mean, seriously, elevators hadn’t been invented yet, so of course not. I, on the other hand, was more than happy to shed my superhero cape and take the easy way up. There was just one minor problem. Or two. Or three.

“How good are you at climbing stairs?” our guide asked, apparently confusing me and my wheelchair for a Greek god and a chariot. Sure I have muscles, but I’m not that ripped. And I’m not Greek. Gulp, she was being serious. The elevator up the precipitous cliff face to the Acropolis was fully operational. But the wheelchair lift to get to that elevator had just broken. Ahead I guessed were 847 steps (I’m bad at estimating—it technically was about 30) that had to be ascended if I was going to view the Parthenon up close.

Complicating matters: Athens was suffering an unusual early-May heat wave. Atop the rock outcrop it was over 90 degrees, humid, and shade free. And the Acropolis, I knew, wasn’t fully accessible. To get to the best views I’d have to walk a short distance over slick marble worn smooth since the 7th century BC. And, uh, I’m somewhat afraid of heights, problematic when the sole operational elevator clings to a cliff face like an elevator clinging to a cliff face. Jesus.

Oh, what would Odysseus do? Probably exactly what I then did—mutter some profanities and giddy up. When you have a disease that challenges you, often you have no choice but to meet those challenges with tenacious stubbornness. Tomorrow, next month, or next year my MS might not be so forgiving, so I was not going to miss this opportunity. No way. And yes, it was absolutely worth the effort. Indeed it was so breathtaking that it didn’t once cross my mind that I later would have to descend 847 (aka 30 or so) steps on jelly legs after spending an hour overheating in midday sun.

Even then I wasn’t too worried. As I boarded the elevator to head down, I had my own personal Athena with me to ensure my safety and watch over my every step. That goddess/caretaker also goes by the name of Laura. And she was not about to let me fall and crack my skull on our first full day of our Mediterranean vacation.

I survived. Day one was officially in the books. Ah, but my odyssey was just beginning.

Thursday, May 4, 2017

Collective Voices, Dropping the Mic

Invisible armor? Sure. And conveniently disposable.
MSers Laura, me, Yvonne, and Lisa.
Let’s not kid ourselves. I didn’t want to get diagnosed with multiple sclerosis. And I’m going to guess you didn’t either. You’ve probably heard, though, people talking about how it’s made them “a better person.” About how the disease has reframed and reshaped their lives … in a positive direction. Whaaa?

When I first heard this, I figured someone had clambered onto the medical marijuana express with no intentions of getting off (all aboard the Ghost Train Haze!). It made no sense. The only thing I was positive about when I was diagnosed: I did not want this shit. Not. At. All.

Which brings me to last week in Chicago for HealtheVoices 2017, a conference of some of the most influential online health advocates in the world sponsored by Janssen Pharmaceuticals (for the record, they paid all expenses related to my trip and everything you read about this adventure are my thoughts alone, not thoughts channeled to me by a toker on an MJ train).

The folks who really moved me. I guess that's everybody. Yes, you too, Josh (far left).
None of us there, 105 advocates altogether, planned to be advocates. Many have serious conditions, some are parents or children or caretakers, and some found this path by happenstance. But all of us—you (yeah, you), me, my fellow advocates—have one thing in common: We didn’t choose to carry this torch.

(A few things about torches. They can light the way. They can warm you in the chill. And they can also set your hair on fire all Michael Jackson like. Use caution.)

Now that I’m carrying this torch—the one I definitely didn’t want to carry—I get it. I get the “I’m a better person part.” Still totally sucks, but I get it. And working with over 100 luminaries in health advocacy at HealtheVoices has only galvanized that feeling. I was going to list all of the advocates I met that moved me, the individuals that really moved me. What folly.

First, I met everyone. As an adviser and panelist for the conference, they asked me to say a few words the first morning to introduce myself and gave me the microphone. Big mistake. I proceeded to inform the attendees that the conference was going to be a complete and utter failure, a bust of epic proportions, if they didn’t go home with a very, very special, life-changing card. That card? My business card. So yeah, by Sunday only a few names were on the potentially bad karma list (I know who you are!).

Second, they all, each advocate, moved me. And no, it wasn’t because they took turns pushing me around in my wheelchair (only Laura can do that). Their stories and energy and spirit are humbling. By the end of the weekend, there were so many mic drops I lost count. They are all now my BFFs, they all understand, they all get it.

Now before you have a conniption fit, understand we are still best buds. Nothing has changed with our friendship. Like Tuco says from Breaking Bad, we are still tight tight. It’s just that instead of thinking only about my 2.4 million pals with MS worldwide, I’m also thinking about my friends with HIV. With IBD. With diabetes. With cancer. With schizophrenia. With psoriasis. With rheumatoid arthritis. With lupus. With you name it.

Me (surprised) and my BFF Ryan. Also shown (note arrows):
BFFs Nicole (left), Yvonne (middle) & Kelly (photobomber).
When you have an incurable disease, the weight of the world on your shoulders can feel pretty immense. But know that there are more than a billion Atlas’s out there, each one with his or her (or their) own personal earths settled on a pair of weary shoulders due to a myriad of health issues. And they all bear this weight just like you and I have to.

We still don’t have to like it. But I have to admit my life is, without question, richer because of MS. And part of the reason for that: all the BFFs I’ve made in the 11 years since my diagnosis. Not to say a cure wouldn’t be awesome, but I wouldn’t trade my friendships with all y’all for anything in the world.

p.s. Speaking of mic drops, even the sponsor got in the act. Janssen announced the HealtheVoice Impact Fund, a new $30,000 grant to fuel impactful projects created by online health advocates (501c3 not required). Anyone with an online presence can apply. That’s how the conference closed. Boom, thank you, and goodnight.

Tuesday, February 14, 2017

Eye Caramba!

Stuck on the bike path behind a logjam of cute kids on training wheels, I had to exercise patience and wait for Laura. Not because she was behind me, oh no, I was right on her tail. No, it was because I had to wait for her to do her spot-on impersonation of ER docs treating a heart attack victim with an AED. I geared down to prepare to pass as she charged up the virtual paddles.


That was my signal. We moved in tandem into the opposing bike lane and stomped on it, tucking back into our lane after we passed mom and dad. I’m sure they had no idea one of the cyclists who just rode by was legally blind at the time.
Oh, the joys of MS. People are always taken aback when I detail all the ways multiple sclerosis can F with your body. For someone living with the disease, none of it is truly a surprise. But I like to say that when optic neuritis strikes, you never see it coming (sorry, sorry, terrible pun).
Eyesight issues affect about half of those with MS at least once—blurry vision, blindness, double vision, uncontrolled eye movements, graying of vision, you name it—and visual problems are often the first symptom of the disease (I had lightning flashes in the corners of my eyes). Thankfully, symptoms often recede partly or fully over time, but sadly not always. Although my vision is mostly 20/20 these days, for the first several years of my MS journey that certainly wasn’t the case.
When my eyes first started giving me fits, it felt like someone had mucked with the contrast and color on the TV of life. Everything was muted, flat, off. I so wanted to whack the side of planet Earth to fix the picture. My eye doc was frustrated, too, as the best he could correct my eyesight was to 20/40, right on the cusp of hanging up the keys to the car. But it wasn’t just the blurriness. Colors were mostly gone. Reds and greens became grays, so I was never 100 percent sure whether to go or stop at streetlights. Um, kind of a problem.
At least I could still sorta see. That wasn’t true on the bike trail, though, as exercising on warm days overheated my body, thoroughly cooking my vision. How bad was it? I only became aware of oncoming cyclists at the precise moment they were passing me by. That meant devising creative strategies to keep riding, one of which was the utilization of a seeing-eye-wife, er Laura. After I warmed up, she was not much more than a blob on the trail (a cute blob, for the record), necessitating me following her verbal commands in an unlikely bike ballet. But it worked.

Now I’m not advocating hopping on your bicycle when you are imitating Ray Charles (or god forbid get behind the wheel of a car), but I am advocating that you don’t turn a blind eye (ahem) to living the best life possible when confronting vision issues brought on by MS. Goodness, if I had taken that approach I’d have spent months in bed with the sheets pulled over my head. And since I enjoy most types of beans—except for canned limas, of course—that may have been catastrophic. Egad, just the thought.
You might be reading this blog with type the size of skyscrapers. You may be listening to it as a computerized audio translation. Perhaps someone is reading this aloud to you wondering quietly to herself who the heck is this optimistic Dave guy who overindulges in beans. The point is, you care enough not to let uncooperative eyesight rule your life. You work around it. You deal with it. You go on. We all have to go on.
Multiple sclerosis will always challenge us in expected and unexpected ways. Rise to the occasion and meet those challenges with a ferocious determination, and tell our shared disease, in the words of Mr. Charles, to hit the road, Jack. (Clarification: don’t actually hit said road as asphalt will do a number on your kneecaps.)

Thursday, December 29, 2016

A Very Public Thank You

Bear with me, please. As the calendar flips to 2017, I need to publicly thank a few folks. Okay, more than few folks. Diagnosed with multiple sclerosis just over a decade ago, I’ve had help from hundreds, more like thousands of people. Every day I can point to individuals who have made my life just a little bit easier with this disease. Now I know where I am going to end my kudos—with my caregiver and life partner, Laura. But where the hell do I start? Why not at the beginning….

So on the night my right side went numb, thank you to the ER doc for not tip-toeing around the possibility that it might be MS. And to all the neurologists and specialists and doctors and EMTs and nurses and therapists and trial coordinators since then who have supported me figuratively and, that one time, literally, when I passed out taking my first shot

My family. Karen is at left, Kathryn at right.
Thank you to my sister Karen for all of her physical therapy work, my sister Kathryn for her unwavering support, and my sister-in-law Eve who is running half marathons in every state of the union including Washington D.C. (51 in all!) to raise money for MS. Unbelievable. And thank you to my parents who back me at every turn.

Thank you to all the people who have opened doors for me over the years. And to all the people who didn’t just grab the door I was already opening because they could see that I was using it for support and that if it were to swing wide open suddenly—picture a rodeo clown throwing open the gates of a pen holding an ornery bull—the gesture of kindness would have certainly pulled me along, flinging me asunder and resulting, undoubtedly, in more thanks to EMTs. I mean, I love those guys, but I’ve seen enough of those heroes.

Thank you to all of the kind and generous members of ActiveMSers who have written me over the years with notes of appreciation, some of which have been so over the top I had to forward them on to my parents to read. And to those members who are still waiting patiently for me to write back, thanks for understanding that I don’t always respond promptly (I will write, really!). And to those few who troll me because I need to be reminded that not everyone in the universe is a fan of beer and Cheetos and my humor (wait, whaaa?).

Lenny and Claudia, two of our many dear friends.
Thank you to my friends who invite me to dinner at their home without expecting a reverse invite. To my friends who pass up rocky single track to cycle on pavement with me. To my friends who travel many miles (current record, 8,284 miles) to see me just because. To my friends who continue inviting Laura to partake in those passions that I can no longer easily do (snowboarding, hiking, the works)To my friends who understand.

Thank you to the mailman who waits for me to answer the door instead of dropping the package at the stoop so I don’t have to bend down to pick it up. (And inevitably teeter over, hello EMTs!) To my bike tech who pushes me to the front of the line to keep me riding because he knows how important it is for me to stay fit. And to my neighbors who insist on looking after me even though I insist I am fine-ish. (Urban Dictionary has 73 and counting definitions for the word fine, most of which have little to do with actually feeling fine.)

Nicole Lemelle from My New Normals.
Thank you to all who have offered passionate and “insightful” advice about diets, Lyme disease, teeth fillings, turmeric, airport metal detectors, aspartame, and the cavalcade of all of the many cures (CCSVI!) that have been published on the internet and have mysteriously escaped my notice these past 10 years. Your advice keeps me on my toes when it comes to vetting the latest MS buzz. And thanks to the researchers who work tirelessly to separate fact from the poppycock.

Thank you to all the members of ActiveMSers who continue to inspire me far more than they could ever imagine. And to those members who contribute to the website, forums, and social media, further inspiring all of us with this disease. And to all the champions of our shared disease (as well as other conditions) who I have had the great fortune to cross paths with virtually and IRL.

And thank you to my wife Laura—for everything. I notice. Every moment of every day.

To all, have a fantastic 2017. And if I didn’t thank you here, crap… that was a colossal oversight. Sorry. I’ll make it up to you in my next thank you blog. Probably in ten years because I’m lame like that. Happy New Year!