Dave Bexfield, 45, is the founder of www.ActiveMSers.org, a website designed to help, motivate and inspire those with multiple sclerosis to stay as active as possible—physically, intellectually and socially—regardless of physical limitations. Established when Dave was diagnosed in 2006, ActiveMSers has helped hundreds of thousands of people with MS from around the world through its encouraging website, blog, Twitter feed, Facebook page, and discussion forum. Its 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 he has been profiled often in local media. His video recapping his groundbreaking NIH-sponsored stem cell transplant 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 this past August one of histravel stories won the international New Mexico True ultimate insider contest thanks to the support of dedicated members. Armed with attitude and a pair of forearm crutches, Dave continues to travel the world with his wife of 20 years, Laura.
My first symptoms started shortly after I returned from a trip to Vietnam and Cambodia in the early part of 2005. My wife Laura and I have traveled the world extensively, visiting dozens of countries, but nothing like this had ever happened. Flashes in the eyes sent me to the eye doc. Strange, I thought. He found nothing. Then a series of odd symptoms that would just last a few days: burning knees, burning chest, an arm that fell asleep for no reason. 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. I created ActiveMSers March 2 of 2006, just eight days before I was clinically diagnosed March 10. The next day I snowboarded in two feet of fresh powder. I started on a disease-modifying therapy March 28, combining the DMD with another drug as part of a three-year clinical trial. (New patients who have never taken DMDs are most needed for trials so I volunteered.) Turns out I was on the placebo arm of the study, which was okay since the add-on medication ultimately failed to show benefit.
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. There were no alarm bells. Then in May of 2009 it got nasty. And nastier. Brilliant—my multiple sclerosis had turned super aggressive. My original FDA-approved therapy was failing. So naturally I panicked and shaved my head to change my luck. (Memo to self: a) that does not work and b) wives 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. I relapsed on the trip (yet here’s how I seized the day) and the 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 occasional 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 even sign my own name legibly. It was blindingly fast.
As a guy diagnosed in his late 30s, statistically I'm going to have 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 five years, and fewer still are life threatening. I was in big trouble. But that's strangely good news for you, because it has given me a much better perspective on this disease. 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.
Thankfully hair grows in Italy.
New immune system: 3/25/10
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 doable.) So my wife and I made the difficult decision to fight this inferno… with an inferno. A blaze so furious I would hesitate to recommend it to any fellow MSer except in the most serious of cases. And here’s where the story gets interesting.
In early 2010 I enrolled in arguably the most aggressive clinical trial for multiple sclerosis: 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 were 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 to dramatically stop disease progression in most cases and even reverse some disability, was right. So we 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 SCT story and recovery is detailed on our forums.
Since the transplant I've had zero disease progression, zero new or enhancing brain lesions, and have seen improvement in virtually every measurable area. My unaided walking went from 100 meters to 700+ meters, and I can hike for over two miles with my forearm crutches. My brain is humming again at full speed (ha, I’m even in the 99th percentile for my age on the popular brain game website Lumosity). Best of all, the “agains” keep coming—I can drive again, grocery shop again, type again, go the gym again, ride escalators again, walk hand-in-hand with my wife again…. Heck, last winter I even snowboarded again! (Pretty? No. Pretty awesome? Hell yeah!)
I now go back to Houston annually and will continue to do so through 2015. I'm on no daily medication for MS or, for that matter, anything else. The only supplement I take is Vitamin D. I'm still gimpy, often using a cane around the house and one or two forearm crutches when I go out. I do use my walker when cooking complicated meals and at bedtime (easier to stumble to the potty). For those curious, I still exercise vigorously every day for 1.5 hours: cardio, strength, and stretching. And with a recent trip to France and a voyage to Russia and the surrounds (including to Sweden to visit a fellow active MSer), I definitely still travel.
What does the future hold? I don't know, and can't even begin to predict. There's hope in spades with this treatment and MS research in general is improving by leaps every year. Be active, stay fit, and keep exploring!
Dave has presented a message of hope every year since 2009 at New Mexico's BikeMS event. Below are links to his moving speeches and videos. Grab a cold one, sit back and enjoy.
HOPE, THE BEGINNING—At left is the speech I gave to New Mexico’s BikeMS participants in August of 2009 (complete with typos—hey, it was a speech). It will give you a little more insight into me, the challenges we share together, and what I am certain will be a brighter future for all of us with this disease. I gave it the evening I returned from my first stem cell transplant appointment in Houston.
HOPE, PART 1—At left is the 13-minute video of Dave's stem cell transplant experience. A version of the video won "fan favorite" at the American Academy of Neurology 2011 Film Festival and was used on Capitol Hill to lobby for health insurance reform. It debuted at BikeMS in Santa Fe, NM, on August 28, 2010, fulfilling a promise made in his 2009 speech.
HOPE, PART 2—At left is the 4-minute video of Dave's stem cell transplant recovery at a year and half—from the insurance denial art project to his breathtaking improvements to cycling for the first time in two years. The central message: the importance of spreading hope. It debuted at BikeMS in Santa Fe, NM, on August 27, 2011.
HOPE, PART 3—At left is the 6-minute video of Dave's stem cell transplant recovery at 2.5 years. Highlights include riding one of the most fabled climbs in Tour de France history and a romantic experience in Provence that had been impossible for years. It debuted at BikeMS in Santa Fe, NM, on August 25, 2012.
HOPE, PART 4—For the first time in four years Dave went snowboarding. But what happened that spring was the fall of the first domino that ultimately could change the future of MS and reshape the health insurance industry. See why The New York Times championed his cause in this not-to-be-missed 8-minute video. A renewed hope for a future free of MS begins now. Watch it. Spread it. Believe it. It makes its public debut at BikeMS in Santa Fe, NM, on August 24, 2013.