Tuesday, December 5, 2017

This Is Not Spinal Tap

Getting diagnosed with multiple sclerosis usually takes time. For some, it takes years, even decades. For others it might take months waiting for signs of progression before a neurologist will commit to a diagnosis and start treatment. But recent research has found that the earlier treatment is started—as of this writing there are 13 approved disease-modifying treatments in the US for MS—the better. “Real-world data … confirm the effectiveness of the early treatment strategy in delaying the accumulation of irreversible disability in RRMS patients,” said the October 2017 study.

Yes, “irreversible disability” is as bad as it sounds. You don’t want that. You really don’t want that. But getting in the way of prompt treatment is the fuzziness of an MS diagnosis, a methodical and laborious process of elimination.

So last year when I heard IQuity (pronounced IQ-itty, rhymes with equity), a science technology company out of Nashville, TN, had developed a reliable blood test for multiple sclerosis, I was stoked … and suspect. There are many “blood test” companies out there that will diagnose you with whatever you want, just without scientific backing (“our Lyme’s Disease test is so sensitive it could detect the disease in a caterpillar”). Great! But if no medical professional recognizes the results, what good does it do you?

Fast forward a year.

Multiple Sclerosis Blood Test

IQuity’s RNA blood test, which relies on a number of markers and sophisticated algorithms, reports a 90+ percent accuracy rate in detecting likely MS, considerably more accurate than a standard lumbar puncture that looks for the presence of oligoclonal banding in spinal fluid. The test, IsolateMS, took over 9 years to develop using blood donated by scores of those with MS (including iConquerMS volunteers).

To help get the word out, IQuity sponsored a trip to Nashville this past weekend for ten MS bloggers including me. You’ll likely recognize many of the names, some dear friends of mine and some I’ve been waiting years to meet in person: 

Caroline Craven (www.GirlWithMS.com), 
Kathy Reagan Young (www.FUMSnow.com), 
Cat Stappas (www.ItsOnlyABruise.com), 
Beth Prystowsky (www.ModernDayMS.com), 
Stephanie Buxhoeveden (www.JustKeepSmyelin.com), 
Matt Cavallo (www.MattCavallo.com), 
Dan and Jennifer Digmann (www.DanandJenniferDigmann.com), 
and Laura Kolaczkowski (www.insidemystory.com). 
(Today, I’m proud to say, they are all my buds.)

Now IQuity could have put on a dog and pony show in Music City, but instead CEO Dr. Chase Spurlock made a short presentation, answered questions, and had MS experts—from neurologists to physical therapists—speak to the future of this disease.

Surprisingly, the take-away was not about blood tests and markers, but about the importance of exercise and its potentially neuroprotective role, particularly in hard-to-treat progressive MS. Indeed, I got so excited—as did my bladder—that I had to briefly leave the presentation on more than one occasion, always 10 minutes before a break, which naturally became a running joke. “And in conclusion, that’s why exercise is so critical in MS… welcome back, Dave.”

Diagnosing Multiple Sclerosis

Diagnosing this disease will never be 100% clear. But IsolateMS—in addition to the clinical exam, MRI, and other tests—could present neurologists with another valuable diagnostic tool and one that is less invasive (or, let’s be honest, freaky) than a spinal tap to look for banding.

Speaking of spinal taps and bands, when it comes to more accurately diagnosing MS, one might say IQuity has turned it up to 11. If you don’t get the reference, the conversation with Nigel and Marty from This Is Spinal Tap is below. And okay, maybe IQuity has a touch more credibility than Nigel, but run with me here.

Nigel Tufnel: The numbers all go to eleven. Look, right across the board, eleven, eleven, eleven and... Marty DiBergi: Oh, I see. And most amps go up to ten? Nigel Tufnel: Exactly. Marty DiBergi: Does that mean it's louder? Is it any louder? Nigel Tufnel: Well, it's one louder, isn't it? It's not ten. You see, most blokes, you know, will be playing at ten. You're on ten here, all the way up, all the way up, all the way up, you're on ten on your guitar. Where can you go from there? Where? Marty DiBergi: I don't know. Nigel Tufnel: Nowhere. Exactly. What we do is, if we need that extra push over the cliff, you know what we do? Marty DiBergi: Put it up to eleven. Nigel Tufnel: Eleven. Exactly. One louder. Marty DiBergi: Why don't you just make ten louder and make ten be the top number and make that a little louder? Nigel Tufnel: [pause] These go to eleven.

If IQuity has indeed turned it up to 11, how then can our future brothers and sisters in MS limbo get this test? (And, perhaps, one day you, as IQuity is working on another test to help determine if a DMT is working.) Talk to your provider and neuro to let them know it even exists. At this point, health insurance companies are reluctant to pay for the test (currently over $1,000), but with enough interested voices, that tide will change and IsolateMS will become part of the multiple sclerosis diagnosis landscape. And, God willing, any mention of spinal taps and bands, at least when it comes to MS, will gradually fade into distant memory.

Friday, November 3, 2017

Change of Plans

After I sprinted face-first into a tree playing kickball in 7th grade, a few things immediately ran through my twelve-year-old brain. One, that friggin hurt. Two, maybe I shouldn’t have just lectured my teammates to try harder to catch pop flies in my tree-littered front yard. And three, my future as an international spy was over.

As blood from my lower lip was staining my shirt at an alarming pace, my mom tried to calm me down. But it’s hard to calm down when your life’s career plan just careened off a cliff. (And have you noticed that one always “careens off a cliff” never off a small ledge into a field of flowering poppies.) The hole in my lower lip needed stiches, multiple stitches. And as the doc was tugging needle and thread through my puffy face, he announced that, yes, it would leave a mark. A scar. I was distraught.

Based on my extensive middle-school knowledge of foreign espionage, nothing was worse for a future spy than a tell-tale, identifying scar on your face. Nothing. Granted, growing facial hair, aka a beard, would have solved the issue rather quickly, but facial hair was not yet on my radar at 12. Spying was. And, just as suddenly, was not. My future career opportunities, with the gnarly scar and all, now appeared to be winnowed to driving a school bus part-time or playing a masked cartoon character at Disneyland. Maybe Disney World.

I was mourning the loss of a future I thought for certain I was supposed to have, not unlike what happens when you get diagnosed with a (currently) incurable disease like multiple sclerosis. Everything gets fuzzy, hazy. Certainties become maybes, and maybes become wishful thinking.

Before I got diagnosed with multiple sclerosis, I had lots of plans, including one in particular: to snowboard until I was 80 years old. My favorite day of the year was the summer solstice, because that meant winter was coming, and this was years before Game of Thrones. I was a daily exerciser, not for my health, but to get ready for ski season. Working on balance, endurance, strength, and explosiveness, my body was always prepared when the flakes started to fall.

Okay, so I only made it to age 40. No, that wasn’t my plan—hell no. But plans change. In the game of life, plans always change. When life doesn’t go to plan, and health issues usually aren’t planned, it’s easy to wallow in sadness, frustration, fear, anger. There aren’t enough emoticons to convey the feelings that rush you when getting diagnosed with a disease. Besides it would max out your cell phone data package and drive your friends bonkers as they try to decipher a string of facial expressions only a crack international spy could decipher. Oh, the irony.

So getting diagnosed with MS (or insert your disease of choice here) means you have to draw up a new play in the huddle, on the fly. So what? Zig left instead of right. No, it wasn’t the original play call, but you can make it happen. Trust yourself and make it happen. Just watch out for the dang trees when you run your new route.

Wednesday, October 4, 2017

Virtually Inaccessible

I should have been tipped off when our Slovenian guide looked me at as if my head had just sprouted a glow-in-the-dark unicorn horn studded with bedazzled rhinestones perfectly placed by a unicorn horn bedazzler (as seen on TV, I’m guessing).  

“Yes, the cave eez technically wheelchair accessible,” she said, pronouncing each syllable of “technically” with intent. She tried to illustrate the steepness of the path through Postojna Caves with her hand. Her palm was a few degrees shy of vertical. Laura was thinking, clearly, it couldn’t be that steep. After all, there were people on our tour who did not appear to be mountaineers. Meanwhile, obviously, I was thinking one thing: game on.

At least the train was accessible.
Postojna Caves, a vast karst system, is one of the most popular tourist attractions in Slovenia. Tourists travel deep underground by train 3.5 kilometers, about an 8-minute ride, before reaching the 1.5-kilometer “accessible” walking trail. Their website boasts “wheelchair users friendly.” Of course I’m friendly. This should have been a flag, color red. And if I had bothered to vet the cave on TripAdvisor, I might have stumbled on the one-star review by a fellow wheelchair user with the headline “virtually inaccessible for handicapped.” Even so, my brain would have said, Virtually? So you’re sayin’ there’s a chance! Stupid, stupid, brain.

Indeed, the cave train was accessible, and the eight minutes were breathtaking as we zipped by stalactites, stalagmites, and all those other cool things you see in caves. But the whole breathtaking part took on an entirely new, literal meaning as we started our 1.5-km walk, er hike, er climb. Picture the polar opposite of ADA accessibility, or the steepest path one can walk without needing a rope. And a harness. Perhaps there was a reason I didn’t see any other wheelchair users on the trail. Of the 37 million tourists who have visited over the years, I imagine the total number of wheelchair users attempting the walking trail could fit on one train car.

Lovely switchbacks.
As Laura and I chugged up the first incline, a few things became immediately apparent. One, I would have to crank as hard I could. Two, Laura would have to push as hard as she could. And three, once we had momentum, other tourists better back the hell up because we were going to steamroll them. This technique worked, barely, as we reached the apex of that introductory hill, which exposed the full folly of our decision.

Our path then went straight down. Before going straight up again. And down again. Over and over for the next hour.

I’m not sure which part was more terrifying. The precipitous ups or the precipitous downs, where we both tried to keep the wheelchair from skidding out of control, ramming the safety railing, and launching me into a bed of very pointy stalagmites to meet my grisly doom like a James Bond villain.

Bug-eyed fellow tourists generously wanted to help the guy in the wheelchair with the unicorn horn. Some wanted to help push, others wanted to pull, while yet others took on the job of flagger, warning the throngs ahead with waving arms. It was a full-on team effort involving tourists from around the world. (I cannot tell you how many Japanese grandmothers we had to shoosh from trying to assist.)

Ah, the exit! Way, way down there.
We survived, but barely. And we sweat, a lot. It took maximum effort, indeed an Olympian effort, on both of our parts to explore Postojna. But was it worth it? Hell yes. We all know that there will be times when multiple sclerosis will have the upper hand, the final say, in life’s grand adventures. We have to, begrudgingly, accept that. But even when those MS hills appear impossibly steep, it doesn’t hurt to put on our unicorn horns and try to keep exploring the best we can.

Top photo courtesy Wikipedia by Ivan Ivankovic from Dubrovnik, Croatia.

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.