Thursday, April 21, 2016

But We All Look So Healthy

I’d always wondered how quickly I could insert my foot into my mouth. Generally it takes a few minutes into a conversation, but I exceeded even my own expectations when I tasted the soles of my shoes ten seconds into HealtheVoices 2016, establishing a new personal record (and you thought PRs were only for athletic achievements!).

When I was invited, all expenses paid, to attend and participate in HealtheVoices 2016 in Chicago, “a first-of-its-kind, weekend-long conference that brings together online advocates from across various health conditions,” I immediately wondered, um, why. The event was sponsored by Janssen Pharmaceuticals (along with Everyday Health), which currently only dabbles in multiple sclerosis research--there was nothing concrete in the pipeline for my disease. And the premise of the conference sounded sketchy--“to provide valuable content, such as tips to further engage and grow an audience; thought-provoking conversation; and networking opportunities for online health advocates”--triggering my pharma-dar to go off. Lots of giving, not much taking. Suspicious. What was the catch? So I asked. The vice president. 10 seconds into the conference. Oh, Dave.

Okay, a few disclaimers: a) I did not know that Linda Fedow was the VP (aka, the “boss-boss” according to others at Janssen) when I half-jokingly said I didn’t want to speak to a Janssen rep (after all I was excited to meet the other 90+ patient advocates, all of whom I had diligently researched beforehand), b) after I discovered she was the boss-boss, I immediately quizzed her on the wisdom of my presence, and c) yes, I did tell her I should be next years’ keynote speaker… before discovering the two speakers for this event were Jamie Heywood, co-founder of www.PatientsLikeMe.com, and Kevin Pho, the doc behind www.KevinMD.com. Oh, Dave.

I was surrounded by social media rock stars in patient health advocacy… 300K Twitter followers, 100K Facebook likes, a zillion subscribers on YouTube were not uncommon. On the MS front, I finally got to meet the one and only Trevis Gleason (http://trevislgleason.com/) who blogs for Everyday Health. We both started blogging 10 years ago (ActiveMSers launched just a couple weeks before Trevis’ blog), making the two of us arguably the longest tenured MS bloggers on the planet. Longtime buds Lisa Emrich (Carnival of MS Bloggers), Lisa Dasis (MS Lisa Says), and David Lyons (MSFitness Challenge) rounded out the MS contingency, although another blogger—a breast cancer survivor—had been recently diagnosed with multiple sclerosis. Ann Marie probably wasn't rah-rah thrilled about joining our team, but she's an awesome fighter and has that kind of attitude all of us with challenges need to channel.

It’s hard to point to one highlight. The educational breakout sessions were fantastic and chock-full of sage advice, tips, and industry tricks. Speakers confirmed what I suspected--that I’m not doing enough video, I need to pay more attention to analytics, and I need to post more regularly. I also learned that I’m doing a lot of things right already--following the rules of the blogging road legally, connecting with you all across multiple platforms (did you know I just started an Instagram account?), and being authentic, honest, and true. The keynote speakers were engaging and practiced (albeit slightly removed from the patient perspective), the networking opportunities were bountiful, and the entire event team was beyond helpful and courteous to a fault.

Best of all, I made a bunch of new besties, far too many to list. Britt at The Hurt Blogger, Marisa at Lupus Chick, Ryan at Crohn’s Guy, Jaime at Pretty Rotten Guts, Josh at I’m Still Josh, Julie at It’sJust a Bad Day, and on and on. It was inspiring and empowering to share the same oxygen as nearly 100 luminaries from the health advocacy world. And the crazy thing: everyone was fantastically upbeat, optimistic, and hopeful, even though virtually all of us were burdened with a serious condition (often multiple conditions), most of them entirely invisible to the uneducated. Heck, we all looked sooo healthy to outsiders! (In fact, I was one of the only visibly disabled attendees, and the only one using a wheelchair.) If they only knew….

And one day they will. As our collective patient voices continue to get louder, thanks in part to events like these, more and more people will know and comprehend (at least a little) the struggles of those facing chronic health problems and the importance of finding better treatments and, ultimately, cures. But more importantly, our voices will continue to spread, reaching those most in need of hearing of them—those who share our conditions and need support, education, and the reassurance that life goes on. No matter what the heavens throw at us.

Hope to see everyone for HeatheVoices 2017… even if I’m not your keynote speaker, Linda.

Thursday, March 24, 2016

Small Victories

 The task ahead of me was monumental, some might even say epic. The challenge? Descend a near vertical cliff face through clutching mud in blistering rain, the trail dangerously exposed, before traversing miles of devastatingly slick boulders to reach the final goal of my pilgrimage: the shores of the Pacific ocean. Well, at least that’s what a short quarter-mile hike in a light drizzle down a trail at Olympic National Park felt like to me, a seriously gimpy dude with multiple sclerosis.

The park rangers suggested Ruby Beach had the easiest access for someone who is handicapped—“it might even be accessible for someone who was pretty good with a wheelchair” they intoned. I guess by “pretty good” they meant a Paralympian with tree-trunk arms and no fear since there were many, many steps. So, possible, yes. Realistic? Hahahaha.

But I like a challenge. I was pretty sure I could make it down with my forearm crutches, I told Laura. She nodded.

“I’m sure you can make it down, too. I’m just worried about the whole ‘up’ part.”
She did have a point. When I bonk, I really bonk and need rest… a lot of rest. This hike, a total of a half mile, could take hours. I figured, bah, there was a light breeze that easily carried any caution (and perhaps sanity) away.

The trail was a touch muddy, but not sloppy. The trail in places was a bit steep, but not steep steep. The stairs were many, but not too many. The pebbles on the beach were tricky, but not too tricky. Best of all there were places to rest all along the way—a bench, a rock, a perfectly placed log.

When I finally made it to the beach (and since you are reading this, made it back without the help of EMTs), it’s hard to relay my elation for such a small victory. I just sat there with Laura and took in the Pacific and all of its vastness as the afternoon unwound, the regular trappings of my disease the furthest thing from my present.


For some, small victories might elicit a shrug--remembering that coupon in your wallet to save you $1 off your kids’ Happy Meal or guessing the right TV channel in your hotel room on the first try. But small victories when you have a disability are just like big victories, only without the fanfare. And we have to celebrate them. Be proud of them, no matter how insignificant they may seem to an outsider. They all matter in their own way. We are all champions.

Thursday, January 14, 2016

Stubborn or Stupid?

Stubbornness is a trait often revered in those with a disability. That attitude of defiance that we give to our disease so we can power through the tougher times. That ability to raise our middle finger and shout “Take that, MS!” as we soldier on in our quest for normalcy. Alas, there’s a fine line between stubborn and stupid, especially when you have multiple sclerosis—and I’ve got both pretty well covered. Don’t make my mistakes…

Walking around the kitchen, eschewing your walker, cane, even the helpful wall? Stubborn! Falling in said kitchen and breaking a leg? Ah, stupid. Killing a big, very hairy spider for your wife despite your physical limitations? Stubborn! Slipping and falling after cleaning up said spider, bumping your head necessitating a trip to the ER before you bleed out? Ah, stupid. Decorating the Christmas tree, insisting on hanging every sharp, star-shaped ornament personally even though you have crummy balance? Stubborn! Teetering into the Christmas tree, bear hugging it before knocking it completely over onto your unsuspecting dog, while in the process impaling yourself on multiple stars, glass icicles, and a pointy Santa that gets lodged deep inside your left nostril? That would indeed be stupid, especially since I don’t even have a dog. Thankfully I’ve avoided such an accident to date. (Memo to self: don’t do that.)

Holiday accidents that could spur a viral video on YouTube aside, there is one area of stubbornness that many with multiple sclerosis hold onto with fervor: driving the way you’ve always driven. And I’ll say it now: that’s stupid. Really, really stupid.
There are myriad ways our disease tries to keep us from driving: eyesight, coordination, leg numbness, cognition. When a bout of optic neuritis hit me in 2007, my vision, even corrected, dropped to 20/40—the limit for driving—and I also went colorblind, so red and green were the same color (hardly ideal when it comes to streetlights). That eventually passed, but numbness in my feet and legs only got worse. I started changing the way I drive because of MS in 2008, just a couple of years after diagnosis.

Many of you know what changes I’m talking about. At first they are subtle: avoiding rush hour, leaving more space between you and the car in front of you, getting prepared to stop earlier. Avoiding wayward buffaloes at all costs. Eventually I stopped driving friends, family, and even my wife for safety reasons (they were all better drivers). For a year and a half I didn’t drive at all. When I did start up again, I stuck to side streets, off hours, daylight, the works. For years the writing was on the wall, but I was a stubborn MSer. How stubborn? Stupid stubborn.

Now in the ten years that I’ve had MS, I’ve never had an accident (other than running into a person who jumped in front of my truck trying to commit suicide, long story). But I have had some disturbing moments. Once, when I reached a stoplight with the engine revving full steam and the car not slowing that quickly, it took a second or two to realize I was stomping on both the brake and accelerator at the same time. And then there was that one time when I missed the brake entirely and nearly veered into traffic forcing me to loop back over curbs before I found that elusive stop pedal.

But I told myself I could still drive okay—I just had to be more careful. Yeah, that was all. I’d drive with one hand on the wheel, the other under my right leg to lift it from accelerator to brake. Leaving 10 or 20 car lengths of space between me and the driver ahead of me should allow ample time to find the brake if I miss it the first (or second) time. And to avoid driving through the back of my garage (like a few too many of my MSer friends, yikes!)—which was located up a short but steep incline, meaning I’d have to gas it to get up the hill and then immediately get on the brake when entering the garage—I’d just text my neighbor to park the car for me. Wait, what?

So this past July I got hand controls … and I’ve been beating myself up ever since. The very moment I started modifying how I was driving back in 2008 is when I should have started the switch. I could have been driving all these years safely, without a worry. I could have been sharing the driving load with my wife on all those road trips. I could have been enjoying the freedom of the open road instead of dreading every moment behind the wheel.

If you have ever wondered to yourself if the time is right for hand controls, the time not only is right, it was probably right a few years ago. There are times when being stubborn with MS is laudable. And there are times when it is just plain stupid. Please learn from my mistakes. And for gosh sakes, watch out for man-eating Christmas trees.

Sunday, November 1, 2015

Stealing Back Passions


Multiple sclerosis has a tendency to really, really annoy you. For people who don’t have this disease, this is a difficult concept to fully grasp. The best way I can put it: combine Jar Jar Binks, a shoe freshly stepped in dog doo-doo, Nickelback, reality TV shows, impenetrable battery packaging, potholes, the last episode of Dexter, and trying to find the start of cellophane. That kind of annoying, times, well, a billion. And one of MS’s prime annoyances is its proclivity to steal away passions you enjoy.

I used to be a bike rider, until balance issues knocked me literally off the saddle. So last year I swiped back that passion, purchasing a trike. Once again I was able to hit the trails, finding renewed freedom on three wheels. But then this spring my MS went all Screech on me (i.e, extremely annoying, re: Saved by the Bell), pirating my leg strength. That meant my already short and slow trike rides had to get shorter and slower. When Laura, jogging leisurely, quickly turned into a distant speck while I tried desperately to keep up with her scorching 6 mph pace, I almost cried Uncle. Almost.

While my legs bark at me these days when I do anything remotely taxing—like going to the pantry to grab a bag of Cheetos or to answer the front door (Laura wisely put up a sign that reads, KNOCK LOUDLY AND WAIT A FEW MINUTES, seriously)—my arms thankfully are still mostly cooperative. Yeah, they are numb, my right side can get a bit “heavy,” and coordination is not 100%, but they work infinitely better than the two sticks masquerading as functional legs. Why not a handcycle? I discovered last year I couldmotor on one, and I could pass along my newish trike to Laura so we could actually ride together.

Now I am not going to deceive or kid myself. Having multiple sclerosis means there will always be this tug-of-war, an unwelcome thief trying to swipe joys and a stubborn SOB (uh, me) who doesn’t want to let them go. I have a simple rule: When multiple sclerosis tries to steal your passions, do everything in your power to steal those passions back. I know I won’t pull that flag onto my side every time, and even when I do, it might take on a wholly new form (a handbike rather than a bike-bike). But I have to try. I always have to try.

So this past week I raided my disease’s passion chest, and stole back my passion for riding once again… with a little help from Craigslist (and a good friend with a large minivan). I went farther on my new arm bike than I’ve ridden on any type of cycle in the last six years. And then I did it again two days later. And again today. And I’ll keep doing it again and again as long as I can, sacking as often as possible my multiple sclerosis like the hell-bent marauding plunderer I’ve grown to become.

Wednesday, October 7, 2015

Treatment Quandaries

Recovering from HSCT in 2010, the last time I treated my MS.
Grumble, grumble, grumble. No, that’s not my tummy pre-breakfast urging me to consume multiple doughnuts (mmm, doughnuts). It’s just me, grumbling about my MS, which has gotten feisty again. After more than five years of being medication free following my stem cell transplant for my particularly aggressive form of multiple sclerosis, I recently was tasked with choosing my next form of treatment. And boy has the treatment landscape changed since 2010 when I got my HSCT.

Back in 1993, the decision of what MS drug to take was moot—Betaseron was our only option. But now it’s like picking out a salad dressing at the grocery store. So many choices! Do I go with the garlic peppercorn ranch with an outside risk of PML or do I try the balsamic vinaigrette that may hose my thyroid? Or do I skip the dressing entirely? Deciding what to do can be so taxing. Here’s how I broke it down, and how I came to a (sorta) satisfying answer.

Right now my disease feels like it is in the slow burn stages. Nowhere near the inferno of the fall of 2009, thankfully, but it’s been swiping my mobility like those people who nosh on grapes in the grocery store. Popping one or two grapes isn’t noticeable, but after a while, a bunch is suddenly gone. Am I rolling into secondary progressive? That’s a very real possibility and another piece I had to factor into my decision.

For starters, I eliminated treatments I had failed: Copaxone, interferons and Tysabri (and I am JC positive to boot). That part was easy. So was saying no to Novantrone—far too many risks with far too little benefit; doctors are rarely prescribing it these days anyway. Then because of the fuzziness of my MS (no relapses in over five years) I nixed treatments that were generally ineffective in secondary progressive trials, so Gilenya, a powerful RRMS oral drug, was out as was Tecfidera, which also showed inconsistent performance in progressive MS.   

What about Lemtrada? It’s a big gun, and a treatment I tried to get on in 2009 as part of a clinical trial, but there would be a few issues with taking it now. It works best in the relapse-remitting phase of the disease, the first infusion in New Mexico just took place last week so the waiting time would be lengthy, and my stem cell transplant took a not so dissimilar path as both are immune system reboots. Also Lemtrada does come with a host of side effects, something I might be more willing to overlook if my MS was raging, but it’s not.

Off label options? Rituxan seemed like a logical, no-brainer path, especially after the recent announcement of ocrelizumab’s success in treating the primary progressive form of our disease. Ah, but lack of FDA approval, likely to happen in 2016, means insurance will not cover the medication—despite me asking nicely. I won one big fight in this department, but two? Wasn’t going to happen, especially since I would not be taking the drug as part of a clinical trial. And finally, another stem cell transplant, the biggest gun (and one I have zero regrets using) seemed like too drastic of a step for a treatment that lasted me fewer than five years and one that would cost me personally six figures. So by process of elimination, that leaves me with one lone salad dressing on the shelf: Aubagio.

No, Aubagio might not have the same oomph in preventing relapses as the other orals, but it does have a wild card: it targets both T and B cells. And B cells, as has been shown in ocrelizumab/Rituxan trials, just may be a key part in treating secondary progressive MS. Plus, its side-effect profile is relatively mellow compared to most other DMDs, although you have to have your liver checked regularly.

So there you have it. Choosing a salad dressing isn’t easy, but if you stand there and stare at the shelf long enough, one usually stands out. Or you throw your hands up in frustration and just go home and make your own: whisk up three parts oil, one part vinegar, a touch of Dijon mustard, salt and pepper to taste, bam! 

Tuesday, August 11, 2015

Extreme Avoidance

I’ve never been much of a shopper. Case-in-point, I’ll conjure up the most bizarre combination of foods remaining in the pantry and fridge to avoid going to the grocery store, which drives Laura bonkers. Sure, I can make dinner with carrots, leftover rotisserie chicken, frozen peas, half a lime, fish sauce, and a package of ramen (hmm, sounds kinda tasty). And just as suddenly as I develop my spontaneous menu, my wife is at the grocery store purchasing all these fresh veggies with instructions for me to use them or else. Ah, success once again in sidestepping shopping. But sometimes your hand is forced. Like when your underwear needs replacing.

Yeah, I know. Dave, it’s just underwear. You can wear it forever. No one will know how smarmy it is. That’s what I thought, too, until I finally held a pair of my boxers up for inspection and discovered it was basically a rag barely attached to an elastic band. The holes had gotten so big that a warning label was required as the undies were now choking hazards for small children. (“What happened to little Jimmy? Got his head caught in Dave’s boxers—a tragedy. At least they were freshly laundered.”) If I were to put this pair in a piece of luggage and try to fly with it, TSA would confiscate it for immediate incineration. The Smithsonian has been leaving messages to put it on display as an artifact from the 20th century. You get the picture. And if you didn’t, I’ve included a pic of said undies. I’m sorry, there are some things you can’t un-see.

Okay, shopping was now required. Ugh.

As someone with multiple sclerosis, and being, well, a dude, there are few chores I dread as much as wandering crowded, loud malls teeming with oblivious shoppers who almost appear to go out of their way to run into you in order to look at inexpensive sunglasses and cellphone cases on a cart by the escalator. (Speaking of escalators, tragically a woman recently died in China falling into one and another man lost his leg, yikes.) The cacophony of it all just gets to be too much.

Men's underwear circa 15th century. That's damn old.
So when I have to clothes shop, I make it count. If I’m forced to be physically present in a store to try on stuff—jeans, shirts, shoes—I’m buying enough to last me a few years. This technique obviously has risks, which explains some of my dated fashion disasters. (I thought, unwisely, that Dockers and pastels were going to last longer than 1986.) But when it comes to clothing that does not need spousal approval, i.e., underwear, I order by the pallet, fashion sense be damned.

Now I am awash in so much underwear that I could fill a tub and bathe in Hanes. Our rag drawer is again bursting with newly added cotton dusters, all with a convenient front pouch to grip. And my MS will not thwart shopping trips for years. Because, let’s be honest, I’m not venturing out shopping again until I need new underwear!

Sunday, May 31, 2015

Perils of Duty

Believe it or not, my wife Laura is not, I repeat, not a fan of spiders. In particular, large, hairy spiders. So it falls upon me, as the spouse without an aversion to arachnids, to dispatch of said spiders. Fortunately, most eight-leggers taking up residence in our household do not meet this description and I can shoo them away to live another day and feast on our home’s pests. Alas, on the eve of publishing the most recent ActiveMSers newsletter (subscribe here), an LHS--aka, large hairy spider--made its presence known in the kitchen and refused polite requests to scamper. So I was called into duty and immediately holstered a shoe. But there was a problem, actually a few problems.

Problemo uno: I have multiple sclerosis. Problemo dos: I have balance issues. And problemo tres, I feel I have duties as a spouse that I want to maintain despite my disabilities and will stubbornly do things I probably shouldn’t do. Like take out the trash, wrangle vacuums, and pull weeds without sitting down. And attempt to kill spiders. On a freshly waxed kitchen floor. In socks. After a beer.

Okay, you can already see how this is going to end. BADLY. The good news: the LHS was dispatched. The bad news: in the process of cleaning up the detritus, karma collided with that fleeting sense of accomplishment and despite using my walker “to be safe” I promptly auditioned for America’s Funniest Home Videos sans the video, and, well, the funny. Out went my feet from under me and backward I went, clocking a wall with my noggin on the way down.

Fortunately, splayed out on the ice rink, er, kitchen floor, I took a broken bone count and everything was intact. No muscles were torn. Nothing hurt except for that new knot on my wet head. And then it occurred to me that it was mighty strange that my head was wet considering that I had not just taken a shower. Uh oh. A late night ER visit and three fresh staples later (staples!), not to mention an epic pout face (see above photo), I was as good as new. Well, not new new.

When you’ve got a disease like multiple sclerosis that tries to steal long-practiced spousal duties, making peace with giving up some of these duties is paramount. We want to be helpful like we were before. We want to do the same chores we used to do. We want to be productive and efficient and worthwhile. But sometimes MS makes that challenging. Whether it’s cooking dinner or dressing a child for school or balancing the checkbook or getting the nighttime water, cutting back or letting go of some of these tasks is hard and discouraging. Maddening, even. I mean, I want to be the best husband in the world to Laura, to be her knight in shining armor. Instead, realistically I would be rendered stationary wearing anything metal and my most advanced form of weaponry would resemble a New Balance sneaker.

The realization that I have to give up some of my expected duties as a husband is enough to make me want to bang my head against the wall in frustration. But, as I unfortunately and painfully discovered, that usually just leads to staples in the head. And trust me, you don’t want staples in your head. Besides, it makes getting an MRI rather problematic, you know, with all that metal and all. And I think we can all agree, with multiple sclerosis we have enough problems already!