Seize the day. No matter what MS throws your way, you’ll always be able to capture life’s sweet moments—those special times that overwhelm even this disease. Hold on to those—and never let them go."
Dave Bexfield is the founder of www.ActiveMSers.org, a website that provides motivation and inspiration to those with multiple sclerosis to stay as active as possible—physically, intellectually and socially—regardless of challenges. Established when Dave was diagnosed in 2006 at the age of 37, today ActiveMSers is the largest and longest-running personal MS website on the internet, and has helped hundreds of thousands of people with MS from around the world through its encouraging website, blog, discussion forum, videos, and social media outreach. His motto: Be active, stay fit and keep exploring!
An Albuquerque, NM, resident and longtime professional writer, Dave’s efforts have been championed by The New York Times, featured in a half-page promotion in the Wall Street Journal, and highlighted multiple times in the National MS Society's Momentum magazine (including the Summer 2014 cover). Many other publications have spotlighted his journey and stubborn defiance with MS, including Conde Nast Traveler, Motor Trend, and WebMD the magazine. He has contributed to myriad health sites including MultipleSclerosis.net, Healthline, Everyday Health, and Health Central. Additionally, he is active in the larger MS community, volunteering for iConquerMS as well as the National MS Society (USA).
Dave's video recapping his 2010 participation in a groundbreaking MS clinical trial (hematopoietic stem cell transplant or HSCT) won fan favorite at the American Academy of Neurology 2011 Neuro Film Festival and was used to lobby for health insurance reform on Capitol Hill. And in August 2013 one of his travel stories won the international New Mexico True ultimate insider contest thanks to the support of dedicated members. Armed with attitude, a wheelchair, and a superstar caregiver, Dave continues to travel the world with his wife Laura, who he married in 1993.
Dogged Persistence Pays Off, With Interest
BY DAVID SEGAL
Aug 1, 2014
In this episode, the story of an epic, four-year battle between a man and a health insurer. Typically, these stories end with the same score: Health Insurer 1, Patient 0.
This story is different."
Every MSer has a compelling story about their journey with this disease. Mine is a good bit crazier than most, but in a twisted way, that’s better news for you. See, I’ve experienced a wide range of challenges in a condensed timeframe, and I’ve had to learn ways to cope and approaches to navigate increasing disability on the fly. My advice and recommendations are based on firsthand experience, not conjecture. I implore you not to feel sorry for me. Instead, get inspired by what you can do right now and get motivated to live your best life with a disability regardless of what this disease or other chronic illness tosses your direction. And keep whining to a minimum. That doesn’t fly here.
Life Before MS
To understand what my life with MS is like, it helps to know what it was like before I was diagnosed. I grew up a military brat, bouncing around in California and Ohio before my family (parents and two amazing sisters) anchored in the DC area. That’s where, in 1988, I met my future wife Laura; she had just turned 17, me 20. Five years later we were on our honeymoon, cashing in virtually all of our life savings for an experience of a lifetime: sailing around the world for over 100 days. (Oh, the stories, including getting caught in an epic downpour in the Amazon Rainforest!) When we returned, we ventured west to Albuquerque, New Mexico to embark on a new adventure. It was a perfect place for us: outdoorsy, eclectic, friendly, and spicy! Laura’s career as a hydrologist for the US Geological Survey took off, and my professional writing blossomed. I worked as a newspaper journalist and nonprofit writer before establishing an award-winning advertising copywriting business. And then I fell into the car magazine business, co-owning the largest Nissan publication in the world despite knowing precious little about automobiles.
Meanwhile, we were soaking up New Mexico. We spent life outdoors—hiking, mountain biking, snowboarding, climbing, camping. And we played our favorite sports relentlessly, from tennis and softball, to soccer and racquetball, to basketball and golf (the frisbee version). And as our depleted funds recovered, we made the decision early on to keep exploring aggressively, foregoing flashy new things for life experiences. (Kids? Nope. Both a personal decision and one made by biology.) We continued to travel the world with abandon. Then in early 2005, shortly after celebrating Christmas in the chaos of Hanoi, Vietnam, we arrived at Angkor Wat in Cambodia. But something felt, well, off….
Shortly after we returned, flashes in the eyes sent me to the eye doc. Strange, I thought. He found nothing. Then a series of other peculiar symptoms arrived that would just last a few days and then vanish: burning knees, burning chest, an arm that fell asleep for no reason. Then on September 26 my entire right side went numb over the course of about an hour. The ER doc doubted a stroke; MS seemed like a real possibility. Most tests pointed that direction. So I did what many people do when surprised with a sudden, life-changing health diagnosis. Duh, I freaked out. I couldn’t sleep. Couldn’t speak without crying. Couldn’t eat. I threw a rager of a pity party! To make matters worse, to pass the time, I researched MS on the internet.
Welp, that was a majorly idiotic, boneheaded move! Unlike today, in 2005 the World Wide Web the MS landscape was desolate. A morass of woe-is-me complaining and tales of doom and gloom. Even the rare positive stories were drowned out by negative voices. As an always positive, happy-go-lucky guy, that wasn’t terribly helpful for my mental state or outlook for the future. I started to bitch about the depressing crap on the internet when Laura gave me the eye. You know, that eye. The eye that said stop your moaning. Probably followed by an eye expletive. And then an eye that said in all caps SO DO SOMETHING ABOUT THAT AND BE PART OF THE SOLUTION.
After all, I had all the necessary tools. I could write. I could design websites. I was hopeful, funny, and cheery. With my car magazine experience, I could review and test gear professionally. So I created ActiveMSers March 2 of 2006, eight days before I was clinically diagnosed March 10. After I got a call from my neuro with the expected news—I didn’t need handholding in the office—I was driving into the mountains for a weekend of snowboarding in feet of fresh powder. I started on a disease-modifying therapy March 28 and embarked on the first of five clinical trials. It was hard to grumble about the lack of MS research and new treatments, I reasoned, if I wasn’t doing my own darn part.
For the first few years my multiple sclerosis burbled merrily along, subtly eroding my abilities, punctuating its presence with relapses. Since I was in a trial, my docs—I had more than one neuro—watched me closely and gave me frequent MRIs as part of the study. Even though my disability was increasing, my wife and I made the decision to go for it and keep seeing the world, the harder the better. And boy did we ever. We snowboarded in New Zealand, camped in the Sahara Desert, crawled over temples in Thailand, and trekked in the Himalayan mountains of Bhutan. Easy peasy. Until….
Then in May of 2009 my MS got nasty. And nastier. Brilliant—my multiple sclerosis had turned uncommonly aggressive. My original FDA-approved therapy was failing. So naturally I panicked and shaved my head to change my luck. (Memo to self: that does not work, and most spouses really, really do not like mohawks.) After an unsuccessful attempt to get on a promising clinical trial, I switched to another FDA-approved therapy just as my wife and I rushed to get to Italy before I got worse. But my disease apparently didn’t see that we had plane tickets.
I relapsed on the trip—hell no it didn’t stop us—and that new DMD officially failed in less than four months. Then I tried another therapy. Relapse in the first month. Gack. In six months I went from using the rare cane to needing a walker full time and a wheelchair to travel any distance. Just getting over the threshold to get into my house became a huge chore. My driveway was now too steep to navigate, essentially trapping me in my home. I couldn’t sign my own name legibly. It was blindingly fast.
As a guy diagnosed in his later 30s, statistically I knew I might get it a bit rougher than a twenty-something young woman. And this disease can be frighteningly unpredictable even if you do everything right. Few cases are "malignant" or aggressive enough to require walking aids in fewer than ten years, and fewer still are life threatening. So yeah, I was in a bit of trouble. Now if you are newly diagnosed, you'll read this and your brain will conjure up a worst case scenario. That's normal. So please don't freak out—my case is NOT the norm. Not even close. Really. This was also at a time when newer, potent MS medications were just coming on the market. For all intents and purposes, I was fighting my gnarly disease with interferons and glatimer acetate—bb-guns, not bazookas. So my case isn’t your case. In fact, anyone else’s case isn’t your case, remember that.
Now I’ve always stressed the importance of staying as active as possible. Not just because it will help you manage your MS better in so many ways, but also because when opportunities arise to battle this disease in new ways, your body is prepared. And in the spring of 2010 my body was prepared—I was still diligently exercising over an hour a day even with my new disabilities. (And yes, even though it’s tricky to work cardio at home when you can’t stand, it’s definitely doable.) So my wife and I made the difficult decision to fight this inferno… with an inferno. And here’s where the story gets crazy interesting.
In early 2010 I enrolled in the most aggressive clinical trial for multiple sclerosis at the time: HALT-MS, an autologous hematopoietic stem cell transplant (using my own stem cells from my bone marrow) paired with high-dose chemotherapy. It's not without significant risk—the consent form I signed for HALT-MS listed the odds of death potentially as high as 1 in 20 (true odds have turned out to be closer to a far safer 1 in 100). I had little choice. At that point I was out of options, exhausting all drugs and even clinical trials. My hope: that all the research, which up to that point had shown the HSCT procedure had the potential to dramatically stop disease progression and may even reverse some disability, was right.
After fighting with my health insurer for months to no avail (unlike most clinical trials, there was no funding to cover patient costs), we raided retirement funds, borrowed from parents, and moved to Houston for nearly three months in February of 2010, culminating in a challenging three-week hospital stay at MD Anderson Cancer Center. On March 25 I said goodbye to my current immune system with a stem cell reboot. (My HSCT story and recovery is detailed on our forums.)
The early results were dramatic. My multiple sclerosis unbelievably behaved—zero disease progression, zero new or enhancing brain lesions–and I saw improvement in virtually every measurable area. My unaided walking went from 100 meters to 500+ meters and I could hike for over two miles with my forearm crutches. And the treatment had another side effect my insurer perhaps had not anticipated: I was now healthy enough to right a wrong. Oh boy. The world knows not to piss off a wronged MSer who specializes in PR and public outreach.
With the help of thousands of members of ActiveMSers, rock stars, professional athletes, world-class negotiators, healthcare experts, and a pile of moxie, I went to work. For four years I fought to get my money back from my health insurer, even wallpapering my garage with $200,000 worth of medical bills they declined to cover, and the story got so bonkers it ended up being featured in The New York Times. My insurer finally agreed to cover the treatment. Plus five years of interest. Plus taxes. Over $500,000. You read that correctly. It’s a doozy of a story and one day will be a book. And a movie. Probably starring Ryan Reynolds, because he’s handsome and looks just like me if you really, really squint. No seriously, you just have to squint harder. No, harder!
Unfortunately, by 2015 many of my HSCT gains began slipping, and then slipped some more. Medication wise, in 2016 I restarted on a DMT to try to keep my disease in check. Less than a year later I moved on to yet another DMT. And then in the spring of 2018 to Ocrevus. Today, I’ve fully entered the secondary progressive phase of this disease. Fudge. Cognitively I'm still humming at near full speed, I have little fatigue, and other faculties are functioning decently. So far my arms are hanging in there, but my legs have rebelled. Walking without aids went from challenging to impossible. I now primarily use a wheelchair. Discouraging? A bit. But I keep swinging for the fences even with these latest curveballs. I am lucky just to be here.
I'm still hugely optimistic despite the setbacks. That's who I am. And I am doing everything in my power to keep my body and brain healthy for when even better treatments arrive. I still exercise vigorously every day for over an hour: cardio, strength, and stretching (handcycling is my favorite jam). I still explore the world with curious intensity. Armed with my trusty steed (wheelchair, not caregiver!), we’ve toured so many countries it’s a wonder our credit cards haven’t spontaneously combusted. England, Denmark, Sweden, Latvia, Russia, Germany, Greece, Turkey, Portugal, Spain, Montenegro, Slovenia, Croatia, Monaco. We even ducked down to Peru to explore Machu Picchu. As travel has gotten more challenging, we’ve turned more of a focus stateside, visiting national parks like Yellowstone, the Grand Tetons, Joshua Tree, Death Valley and Big Bend. Yes, I still smite my multiple sclerosis at every opportunity.