Traveler Confessions of an MSer

I’ve been all over the world with multiple sclerosis—to every continent sans Antarctica, to dozens of countries, to thousands of towns and cities. I always wax poetic about my adventurous travels. And yet as a seasoned MS globetrotter, oh so much seasoning, I have a confession. Before every trip, I am nervous as all get out.

One would think after trekking through the Himalayas, scooching on my butt around Machu Picchu, camping in the Sahara, and heli-hiking over New Zealand glaciers, I would be over pre-trip jitters. But no. As the clock ticks down to my departing flight, my stomach is in knots as my brain, despite my best intentions, goes through every SINGLE thing that could possibly go wrong.

Of course that often begins with complications in the bathroom department, then jumps to all sorts of potential calamities and surefire pitfalls that will turn a cheery vacation into a trip of doom. DOOOOM. The all caps (in a bellowing deep voice) is joined by dark clouds, clapping thunder, and a skull-and-crossbones warning beacon shining in the night sky like the Bat-Signal over Gotham.

Here’s the thing. In the 13 years that I’ve had this disease, most of which have required mobility aids including a wheelchair, I’ve somehow managed to survive more than a collective year of intrepid exploration of our grand planet. Hundreds of foreign beds, unfamiliar and inaccessible cities, and countless virtual deathtraps masquerading as bathrooms, and I’m still here, and I’m still having an awesome time.

Now, that’s not to say I haven’t had issues traveling. Oh, I’ve had issues, as Laura would seriously kink her neck nodding in agreement—picture a shelf of bobbleheads going full bore. Traveling with someone who has MS isn’t necessarily a “vacation”. For instance, a wheelchair-accessible water taxi in Venice has to be arranged in advance, isn't cheap (opt for the water buses instead, which are all accessible), and there's that risk of falling into the canal while transferring, getting the chin strap on your dorky hat caught on the propeller, and then drowning while fish finish off your half-eaten gelato. What a waste of good gelato! But the experiences more than make up for the challenges. The memories of fun far outstrip the bumps (but boy do those bumps make for knee-slapping good stories). And every time I get home, I look back and wonder why I was so worried. Pshaw, I think.

There are always hiccups when you leave the relative safety of your home. But even that’s relative. More accidents happen at home than anywhere else, so look at it that way and it makes perfect sense to get out of Dodge. For our next trip, we were almost off to Dubai, Oman, Jordan, and Egypt, but accessibility, 100-degree days, and, well, common sense, dictated the decision to book a more pedestrian cruise to Spain, Portugal, and the surrounds.

I’ll admit the nerves are just starting to percolate, even though I’m months away from our European vacation. Before I embark on any expedition, questions of travel fitness seep into my subconscious, and always will because of this darn disease. And I’ll bet that your brain probably does the same thing. Doubts will abound when you leave your usual habitat, that’s normal. That’s also life—and travel—with a disability.

But I’ll be okay. Just like you’ll be okay. (Quick tip, maybe avoid doing really stupid stuff like running with the bulls.) Keep getting out there, even it's a short road trip on a shoestring budget. If I can do it, I’m confident you can, too. And if you need any extra inspiration, please check out the craziness on ActiveMSers' Instagram (https://www.instagram.com/activemsers/). Happy exploring!

Begrudgingly Sharing My Kitchen

Oof, this one stings a bit. Before I was diagnosed with multiple sclerosis in 2006, I was the chef of the house. I made all the breakfasts, all the lunches, all the dinners. Laura was the baker, the dessert maker. And we were great at our roles. Evenings were feasts and I relished every opportunity to play in my kitchen (emphasis on MY kitchen) and experiment with every type of cuisine this planet has to offer. And I got good at it. Real good. Like chefy good.

As a learning cook in my twenties, though, I had my colossal failures. So colossal, they are lore in our household, defined simply as “incidents”—the blender incident, the cayenne pepper incident, the other blender incident, you get the picture. How was I supposed to know that using a knife to unjam a blender—while it was still running—was a bad, bad idea? Or that measuring spices over a pot of soup could go very, very wrong if the lid on your spice jar plunked off into the soup and the full jar of its fiery contents followed suit? And that leaving a blender unattended on the edge of a counter—spinning wildly with a red fruit smoothie mixture inside—was another bad, bad idea? Other than using logic, there was NO way to know this.

But I learned, and my mistakes grew further and further apart. Dinner parties were routine, and I even insisted on no potlucks. I wanted to cook. All of it. And then MS came along.

Soon after my diagnosis, Laura started making breakfast on a few weekends. I could, but she wanted to help, so I let her. But for the most part I still made all the breakfasts, all the lunches, all the dinners. I didn’t grill as much, but summertime grilling and MS don’t mix that well, sorta like high heat and half and half (uh, don’t do that).

And then a few years ago she took over making breakfast every weekend. I was okay with that. After all, she makes a mean Dutch Baby pancake (with sausage or crispy bacon on the side, crisped just how I like it). And then she was making her own breakfast some mornings. And then she was packing her own lunches for work some days. And then she was helping me in the kitchen some evenings. Suddenly, but not so suddenly, Laura had become my sous-chef de cuisine.

Today? I can’t really cook without her. Her mise-en-place assistance is invaluable, as gathering things to cook given my mobility issues includes the risk of ushering in another ice age due to my glacial speeds. When my hands are too tired (say, after an afternoon ride on my arm bike), she actually handles a knife properly, a massive pet peeve of mine. And now she even cooks fish better than I ever did. I’ll admit, I’m jealous. But proud as hell.

Sure, because of MS my duties have changed in the kitchen, our kitchen, but I’m still a chef. I’ll always be a chef, just like I’ll always be a snowboarder, a hiker, an explorer. Our shared disease often requires inconvenient—and unwanted—changes, and it is how we cope with these new realities that shapes the future richness in our lives. We can desperately cling to what we had as the rope burns through our hands. Or we can evolve and grow and lead fuller lives than we ever thought possible with MS. I choose the latter.

Now it is my job to teach her about a job she never wanted … teach her to be the chef de cuisine. Educate her on the importance of fond when making a pan sauce. Instruct her on the nuances of how to properly bloom garlic, the secret to cooking steak to a perfect medium rare, and why using razor-sharp knives is essential. And nod with understanding when she has the same, ahem, incidents I had decades ago—the wooden-spoon-left-on-a-hot-pan-too-long incident, the paper-too-close-to-the-hot-burner incident. Well, maybe not the same incidents. She knows by now to watch out for that damn blender.

Shocker! Caregivers Are People, Too

Poor Laura. I pride myself on being a bit stubborn with my feisty multiple sclerosis. Often it works. I’ve explored Machu Picchu, scooching down steps on my butt while Demi Moore looked on. I’ve hiked across rickety, bouncy wooden bridges risking life and limb, and survived. I’ve kayaked when I had no business kayaking, driven when I had no business driving, and cycled when I had no business cycling. And then there was last Friday night.

We know how this story ends. Not well.

So Laura and I were at a concert at a local winery, listening to a master sarod player accompanied by traditional Indian tabla drums and the melodic drone of the tanpura. (Yes, I had to Google all of those things, too.) The venue was intimate, cozy, and… not terribly handicap accessible. After navigating grass, crowds, and wine barrels, I tucked into a spot near the stage out of the way of the “abled” and parked my wheelchair to enjoy the performance, while my wife and mom found seats several rows back.

So far, so good. The music was trance-like, and took me back to my travels with Laura 25 years ago to our hazy hot week in Madras. And then there was intermission. Intermission, may I remind you, is when our brains double check our bladders. And my bladder, after the required wine at a winery, was now wide awake as if it had had several shots of espresso.

Fortunately, I was informed that the bathroom not only had a ramp, but also was fully accessible with multiple grab bars. As my 3-year-old niece is wont to loudly exclaim with each and every trip to the facilities, I CAN GO POTTY ALL BY MYSELF! There was just one important, sorta key fact that was left out: to access the accessible ramp to the accessible bathroom, there was this rather problematic 3-inch threshold to get there. Three inches, maybe even just 2.5. How hard could three inches be to navigate solo in a wheelchair, especially if you drop down backward, very, very carefully?

I discovered, hard. As, in excruciatingly slow motion, my wheelchair became a recliner, perfect to view the winery’s exquisitely wood-carved porch ceiling and the nose hairs of panicked patrons now sporting saucer eyes.

MS is everywhere in our lives. Even random Bentleys remind us.

“THAT’S my HUSBAND,” said my rescuer, Laura, as she and other concert-goers rushed to prop me back up. She had been in the line for the bathroom, and was shortly headed back inside to check on me and my needs (oh, so many needs), as she always does.

I have one primary job as an MS spouse: do not get hurt. Thankfully I didn’t! No bumped head, no concussion, no stitches—just a bruised ego. But I did violate rule #2: do not freak out your spouse. I should have asked for help from my care partner. It was an easy ask. But when you have a disability, you want to be as independent as you can be, and that urge can cloud judgement like a Seattle winter.

I upset Laura, which I try NEVER to do. But boy was she was angry, maybe not at me directly, but at this disease, and what it does to our lives, and how it reshapes virtually every little thing. And I can’t blame her. Especially if I had to deal with me.

Caregivers are allowed to get angry. They are allowed to hate the universe, at least temporarily. And they are allowed to roll their eyes when their spouse tries to assuage their feelings by dramatically playing Peter Gabriel’s In Your Eyes ala John Cusack in Say Anything. Yes, I resorted to desperation measures to cheer her up. I looked as despondent as Lloyd did in the movie, only holding up a cell phone instead of a boombox because, well, it isn’t the '80s. And, surprise, it worked about as well as it did for him.

The next morning all was forgiven (mostly). Because when you are coping with a challenge like MS, letting something like this linger doesn’t make it any easier. But for a few hours, a cathartic release is sometimes just what the doctor ordered, and even the best caregivers don’t need a prescription to go there. And it serves as a perfect reminder that caregivers most definitely are people, too. Always treat them that way. Because if you don't, holding a boombox over your head can sure get tiring.

When Adapting Fails, Epically

Oh, Dave. Dave, Dave, Dave. That’s sort of what the voice in my head was saying, along with maybe a few curse words, when I was trying to pee … in public, in broad daylight, in front of dozens of people. Let me explain.

Multiple sclerosis forces those with the disease to adapt as it progresses, to bob and weave around new disabilities, learning new tricks. Recently I had come up with a brilliant one to overcome a common and vexing problem. How to pee on long bike rides when a bathroom wasn’t an option.

In the past, I did what guys do on long rides: find a tree. But as my legs have gotten weaker in the dozen years I’ve had this disease, I’ve had to make changes. Avoid morning rides when my bladder tends to be most feisty, limit cycling excursions to a couple hours, and wear adult protection for emergencies (just in case). This worked okay-ish. But that MS potty pressure—and if you have this disease you almost certainly know what I am talking about—wasn’t going to go away and trying to jump off my trike when the urgency flag was flying had been getting harder, especially with an overheated body due to heavy exercise. What to do?

What my grandpa did when he needed a bathroom break flying B-17s in WWII: pee in a tube. Brilliant! Why hadn’t I thought of that earlier? A quick shopping spree on Amazon got me totally set up: condom catheter and tubing. (Yes, I realize this is a guy solution, but the SHEWEE does exist for women, although for obvious reasons I have not tested this.)

I know what you are thinking. What could go wrong? Other than EVERYTHING. But you would be wrong. It was stealthy, comfortable, and totally stress reducing. Indeed, my maiden voyage was going so well that at one point on the trail I thought I was in a dreamy fairy tale. Running into Rapunzel—yes that Rapunzel, the one with the long hair—will do that to you. Surreal doesn’t begin to describe the experience. (And yes, I did not miss the opportunity to make a lame joke about how long it took to wash her tresses.)

But minutes after our brief encounter, things turned, ahem, hairy. I had to go. Worse, my urgency situation had become rather, er, tangled. I had tucked the tubing deep into my shorts and extracting it meant some rather noticeable (and panicked) hunting in the groin area. Worse, I had just pulled into the MOST public section of the trail. On arguably the NICEST Sunday of the year. Lordy. Bikers, joggers, walkers, dog walkers, picnickers, kids, grandkids, great grandkids, people wandering aimlessly in my immediate vicinity for no discernable reason whatsoever, the works.

Deep breath, Dave. The now-unkinked tube is rather hidden, Dave. No one is looking, Dave, especially with you looking totally nonchalant drinking out of your water bottle, which would explain any puddling. Dave, just channel the theme song from another fairy tale, Frozen. Let it go, let it go, can’t hold it back anymore, let it go. Sing with me now, Dave, you know the lyrics.

Okay, it was a good idea in theory. Stage fright, performance anxiety, tinkle trepidation, call it what it you want. “It looks like you spilled a tiny bit of your Caprisun after you tried to jam in the straw and it broke.” Laura was unimpressed with my efforts and was tired of waiting for the crowds to dissipate given that it was midafternoon and hours from nightfall, so my maiden voyage ended with only limited success.

I’ll try again. I’ll keep adapting. When you have a disease like multiple sclerosis, you have to keep adapting, coming up with new solutions when old ones no longer work. That’s life with a disease. But if you see me pulled off on the side of the bike trail sipping water and looking forlornly into the distance as if I was trying to remember the words to an Idina Menzel song, maaaybe don’t stop to say hi.

When Life with MS Gets Heavy

This isn’t a blog post for newbies. Or for those who don’t want to be reminded about what multiple sclerosis can do to our bodies. Or for those who want a typical Dave happy-go-lucky essay that will make you smile and escape and maybe make you laugh out loud. No, it’s not that. (I can hear the hissing disappointment now.) But after I read a reply to a post I made on Facebook the other day, what I am writing needs to be said. Sorry.

Recently a newer MS drug, Zinbryta, was voluntarily pulled off the market due to serious safety concerns. The response from some in the MS community was predictable. “Exactly why I don't take any of the MS drugs.” Another chimed in. “This is the problem with all of these drugs.” And so on, and so on. One even wrote that her husband got a brain infection (from another drug, apparently one of the 16 worldwide who tragically suffered that fate), and proceeded to warn everyone to be VERY SCARED about MS medications.

Life has risks. Jesus, just stepping out your front door has risks. You could trip over the step, lightning could strike you, a car could careen into you, and then a power pole could be felled by beavers and crush you. Or you could narrowly avoid a power pole felled by beavers only to step on the resulting live wire and get shocked to death while thinking, Whew, lucky that power pole didn’t hit me—stupid beavers.

Likewise, all drugs have potentially serious side effects. All drugs. As do vitamins. Yeah, vitamins. As do dietary supplements. Indeed, the New England Journal of Medicine reports that adverse events from supplements are responsible for an average of about 23,000 emergency department visits per year.

But “pick your poison” anecdotes about MS drugs and their potential side effects, no matter how rare or mild, somehow often trump and subsequently bury all benefits these drugs can deliver to people with MS. And that’s a big problem. Because the potential side effects from our shared disease can be devastating. And this is where it gets heavy. I’ve lost friends to this disease. And I am powerless to help my friends who have enormous challenges daily, hourly.

Recently, Jacob told me about the last meal he ever ate—he now can only taste food with his tongue. He can’t swallow. Or walk. Or use his arms. Or talk. He has a four-year-old daughter, an amazing wife, daily caregivers, and a streak of stubborn like my own. Just five years ago we were laughing and sharing a pint (top photo). And now. Side effects from drugs didn’t make him like this, MS did. The same goes for my blogger buds Marc (Wheelchair Kamikaze) and Nicole (My New Normals), and too many friends I’ve made on ActiveMSers. For too many people I care about, every day is climbing a mountain. Every. Day.

And sometimes, sadly, those mountains get too steep, as this deeply personal and touching story, An Instinct for Kindness by Chris Larner on BBC Radio (link expires March 30, 2018) relays about an MSer’s final journey as told by her former husband. It’s crushing, disturbing, and eye opening. Allyson's MS challenges are not uncommon (creeping disability) and her attempted solutions are not uncommon (drugs, diets, magnets, anything). She finally makes the decision to go to Switzerland, and I can’t blame her.

An Instinct for Kindness on BBC Radio

Her passing, and the mountains looming before friends, might make you feel hopeless to the challenges this disease presents. But wait. Through their stories and struggles, they might be able to help you. Help you not to underestimate MS.

It’s easy to hold on to the idea that the MS you have isn’t going to affect you like it affects others. (That might ultimately be true.) And thinking that way is not just you, and it’s not just people with MS. That trap is set for anyone with health issues, even Steve Jobs, who many considered a genius. He thought that same way when he avoided traditional treatment for his cancer for nearly a year. That’s human. Unfortunately, that’s also hubris.

There is no question bad shit could still go down even if you do treat your MS with the drugs that are available. Yes, there is a chance the drugs themselves could harm you, too—don’t be blind to that. But far more likely: it’s going to be the disease that wreaks the most havoc. Take that seriously. And also take seriously that this disease is most treatable in its early stages, not when it is progressive and rumbling like a runaway train.

I am not trying to scare you. Really, I’m not. I just don’t want you to conflate the risks of a taking a disease modifying therapy with the risks of not taking one. To fall prey to the idea that taking any of the current MS drugs is worse than the disease itself. For the love of God, no. Just, no. They are not even remotely the same, and this general guide on medical risk tries to explain that. And if that sinks in today, don’t thank me. Thank Allyson, Jakob, Marc, Nicole and, to borrow a phrase from Marc, the other incredible souls with this disease who inspire others.

Ambushing Researchers

I’ve been running ActiveMSers for a dozen years now, and while I’ve been to many MS summits and events, I’d never been to a full-on research conference. That all changed with a recent visit to San Diego where ACTRIMS, the Americas Committee for Treatment and Research in Multiple Sclerosis, was being held. It was as advertised: some 1,000 acclaimed MS researchers and clinicians at the top of their game. A restaurant nearby that has a wall with some 1,000 piranha skulls that was just too cool not to take a picture of and stick in this blog. And a dude named Dave. Oh gawd.

Now I didn’t get here because researchers were eager to have a rabble-rousing amateur comedian/MSer harassing them. No, that was Actelion, a pharmaceutical company—recently acquired by Janssen—preparing to enter the MS space with a novel combination treatment (full disclosure: they sponsored my trip and provided a small honorarium). They brought out me and a handful of other well-known MS advocates to pick our brains and get input on their newly launched clinical trial, POINT.

Without going into great detail—because, well, if I told you, I’d have to, you know—POINT is a placebo-controlled Phase 3 clinical trial looking at adding on the oral drug ponesimod to patients currently taking Tecfidera. Since I am not relapse remitting and don’t take Tec, I have no skin in this game. But a month ago by chance (before Actelion even talked to me), I was chatting with my neuro, himself a renown MS researcher, about any exciting MS research on the near horizon. And he mentioned this study specifically. He was that excited about its prospects and the potential power of this combination therapy in MS. So for Tecfidera users interested in furthering research trials, this may be a treatment that could supercharge your MS therapy. Details and eligibility criteria are here.

While Actelion had the “pleasure” of experiencing my humor for hours on end, researchers were not left totally in the lurch, in some vast, empty, Dave-free void. I made sure of that fact the moment my Uber pulled up to the hotel where the meeting was being held, when I ran into a colleague and leading researcher from iConquerMS who recognized me immediately. (An aside, I volunteer for iConquerMS and they are the leading patient-powered MS research network in the world. We need your participation in critical patient surveys to uncover patterns that could lead to a cure for MS. Here’s how you can help.)

Then, using my honed inner radar and expert intuition, I skipped checking in and headed straight into the unmistakable den of MS researchers preparing for an intense, 3-day conference: the bar. My, how convenient, since a beverage sounded good to me, too. But I made a critical error. My wheelchair lacks a cup holder. I was left with a Sophie’s Choice. Sip a Manhattan and Tweet about how I almost met world-renown researchers. Or forgo the beverage and accost every table, reminding each and everyone involved in MS research to get a move on and cure this thing already.

By the time I was finished making my rounds, it was well past midnight, I hadn’t gotten up to my room yet (!!!), and I was darn thirsty. But I learned a lot a lot. Too much to put in a little blog post. My biggest takeaway was the passion and surprising giddiness about the future of multiple sclerosis research. To a fault, all accosted were not only happy to talk to me (as if they had a choice), but also genuinely excited about the progress, and I’m pretty sure it wasn’t the liquor talking. I got the honest sense that this isn’t just a paycheck to them, and many had deeply personal stories about how MS has affected their lives, their families.

When I asked one researcher what message I should take back to my readers, she looked at me with a dead seriousness: “There is hope. Tell them there really, really is hope. I see it. I absolutely see it.”

I could tell you about the conference and some of the interesting talks (including one about HSCT and the trial I participated in specifically). I could tell you about randomly rolling up to people to pick their brains while I conveniently filled them in on ActiveMSers. And I could tell you about how I even harassed one of the keynote speakers moments before his big lecture. (“Boy, I would be hate to be the guy talking to a crowd this huuuge—oh wait, that’s going to be YOU. Oh, jeeze, never mind, you are going to slay. Don’t be nervous.”)

But I just want to tell you that in our world of multiple sclerosis there is hope. And I saw it firsthand.

Sick, With MS

I’m sick, with multiple sclerosis. The comma is intentional. I have MS and I have a cold. Typing is no fun, sitting up is no fun, and trying to be funny is no fun. Fortunately, according to Laura, I don’t have to try to be funny. I just wake up that way with a cowlick. (An aside, when I was younger I used to warn my haircutter that I had colic, which puzzled the hell out of them when they started to cut this teenager’s hair. But that’s how my grandma pronounced “cowlick,” and I didn’t know any better.)

The problem with getting sick when you have MS is that it gets the immune system revving quickly into redline territory. The flu? Let’s put that into the Fight Club category. The first rule: you don’t talk about it. Hell, these days I can’t even think about it. When I got the flu shot a few months ago—which apparently is only 10 percent effective this season—I could not move for six hours (kinda scary) and was down for nearly a day. The real flu? We’re talking ambulance, ER, and a weeklong hospital stay. So let’s not talk about that, shall we?

For me, temperature is everything. My body freaks out like that young kid who discovered that Darth Vader was Luke’s father. Or that baby who lost it over a monkey toy. Lost. It. So the other day, when I felt my cold coming on and my muscles starting to stiffen, I began to, well, FREAK OUT. So I got on the horn asap with primary care’s nurse. This is basically how it went.

Me: My wife is sick and I think I might be getting sick. And I have MS. My body is starting to rebel. 

Nurse: Okay, describe your symptoms. 

Me: I have a slight cough and my temperature went up from 97 to 98.6 degrees.

Nurse: Go on. 

Me: No, that’s all. (Muffled cough.) A cough, like that. No phlegm or anything, just a cough. 

Nurse: Well, I can’t triage you, as these symptoms, well, I can’t even input them into my system. A mild cough and normal temperature fall out of that range, sir.

With  a bonkers flu season, masks should be mandatory.

As I was talking to the nurse, I realized what an idiot I sounded like. I certainly was going to be a topic of conversation at Happy Hour that night. All I could do was wait for the hammer to fall. Or the Dave to fall. Just a degree and a half rise in body temperature—probably unnoticeable in most humans—meant I needed Laura’s help to get off the couch, the bed, the toilet. A comfort height toilet with grab bars, no less! We brought in my wheelchair from the garage, unboxed the bedside commode I purchased last year for just such an occasion (oh joy), and waited. One more tick up in temperature and I’d be joking with the EMTs as they lugged my lifeless body into the awaiting ambulance. And by lifeless, I mean rigor mortis. My spasticity already was raging so badly my legs took huge amounts of effort to bend. If my temp went over 100 degrees, I might be mistaken for a piece a plywood, a potentially disastrous combination if I was living in Florida during hurricane preparations. But I suppose getting boarded over a window might distract me from my illness, a bonus.

Technically squawking (not chirping) cranes.

Six days after I started writing this blog (do the time-lapse, fast forward thing in your head), thankfully, things have simmered down. When I checked my temperature yesterday morning it was a pleasant 96.8, the birds were chirping, and a light exercise session with cardio and stretching was in store. Despite temperatures peaking at a blistering 99.3 degrees, I never resorted to the portable potty, which I thought at the time would make Laura happy. But in retrospect, that stubbornness was a hollow victory. Two hard falls early on meant using my wheelchair full time, and now I plan to see the doc to make sure I didn’t mess up my knee (I’m optimistic I didn’t, as there is no swelling or pain).

We all hate getting sick. But getting sick with an autoimmune disease is a different beast. This is how I handled it. Better than piss-poor, but definitely not that well. How do you all cope? Any survival tricks? Post them below! (But please, remember the Fight Club rule and avoid using the three-letter F word. Just saying you were “sick” is fine.)