Last Updated: August 31, 2011 Writing about yourself is a bit narcissistic. That said, it's even stranger to read about yourself in a huge half-page Infiniti advertisement that appeared in the The Wall Street Journal before 1.3 million people when I launched ActiveMSers in 2006. Since then I've been featured in a number of publications, on the radio, and on Oprah (okay, she ended the show too soon). If you'd like to read more about these interviews, articles and ads, go to ActiveMSers in the News.
Who am I? Contrary to the effusive language used by the copywriters at Infiniti, I'm not a "truly rare person." I'm just a person, 42 years old, with multiple sclerosis. Yes, I have had my share of adventures (my motto has always been that if I keel over tomorrow, I have zero regrets). And yes, I am doing something about my disease.
Career
Pure and simple, I'm a writer. I first sharpened pencils at The Washington Times. Literally, I was a gopher in the sports department. After a terribly boring stint as a tech writer, I moved out of the D.C. area to Albuquerque and began a freelance copywriting business, Dave The Writer. Part time work at the local United Way helped make ends meet for a few years before I cut ties with a regular paycheck. In 2000, I joined Sport Z Magazine, a popular Nissan/Datsun Z car and Infiniti G35 enthusiast magazine, as the editor in chief. In the Fall of '06 I helped found, with the Sport Z team, another Nissan publication, Nissan Sport. The first issue went to press in September of 2006 and the magazine is available today at Barnes & Noble and Hastings bookstores nationwide.
Travels & Adventures
I didn't start traveling extensively until I got married to my amazing wife, Laura, in 1993. Our four-month honeymoon was an unforgettable around-the-world voyage on Semester at Sea. We caught piranhas in the Amazon, witnessed apartheid in South Africa, explored temples in India, and hiked the Great Wall of China. We haven't stopped traveling since. We've been to more than three dozen countries, more than a dozen since I was diagnosed, including much of Central America, New Zealand, Thailand, Bhutan, and Morocco, an enchanting trip where we celebrated Christmas with my family in a tented camp in the Sahara. Our most recent destinations included Quebec City and Italy, where I made the best of a potentially bad situtation.
Multiple Sclerosis
My first symptoms started shortly after we returned from a trip to Vietnam and Cambodia in the early part of 2005. 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, 2006.
Current Symptoms
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. About 10 percent of cases are "malignant" or aggressive enough to require walking aids in fewer than five years. Guess where I fell? Oh joy, lucky me! But that's strangely good news for you, because it gives me a much better perspective on this whole disease. So please, don't freak out when you read this—my case is NOT the norm. Not even close. Really. If you are newly diagnosed, you'll read this and your brain will do this. That's normal.
For the first few years my multiple sclerosis burbled merrily along, subtly eroding my abilities, punctuating its presence with relapses. 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. After an unsuccessful attempt to get on a clinical trial (were my supplements at fault?), I switched to another therapy. It failed in less than four months. Then I tried another therapy. Relapse in the first month. Gack. 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. 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 extreme of cases. I’m currently enrolled in arguably the most aggressive clinical trial for MS called HALT-MS: an autologous hematopoietic stem cell transplant (using my own stem cells from my bone marrow) paired with high-dose chemotherapy. It’s also the riskiest—the consent form I signed for HALT-MS listed the odds of death at 1 in 20. I moved to Houston for nearly three months in February of 2010, culminating in a challenging three-week stay at MD Anderson. On March 25 I said goodbye to my current immune system with a stem cell reboot. Researchers theorize that the SCT procedure may stop disease progression and, fingers crossed, reverse some disability. I’m hopeful. I’m optimistic. My SCT story and recovery is detailed on our forums. I've also started a movement, Spread MS Hope, to accelerate stem cell research and encourage insurance company participation in clinical trials.
Since the transplant I've had zero progression physically, improved my unaided walking from 100 meters to 700+ meters, and experienced no new brain lesions, which has been confirmed on multiple MRIs. I now go back to Houston annually (my next visit will be in April of 2012). I'm on no daily medication for MS or for anything else, and the only supplement I take is Vitamin D. I'm still gimpy, using one or two forearm crutches or a walker when the legs get too stubborn. What about the wheelchair Presbyterian Healthcare gave me instead of paying for my transplant? (You'll want to watch the below videos for that whole story.) Well, it's been used once. And for those wondering, yes I still exercise hard every day for 1.5 hours: cardio, strength, and stretching. And I still travel. What does the future hold? I'm as excited as you are to find out. Be active, stay fit, and keep exploring!
Dave, along with ActiveMSers, was featured in a large Infiniti advertisement on page A3 of the June 15, 2006 edition of the Wall Street Journal.
Dave is a co-founder and managing editor of Nissan Sport magazine, a publication for Nissan, Datsun, and Infiniti enthusiasts.
Dave, with wife Laura, find great pho in Hanoi, Vietnam.
HOPE, PART 1—At left is the 13-minute video of Dave's stem cell transplant experience—from the insurance denials to the effects of chemotherapy to the ongoing recovery. 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 7-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.
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.
