______________________________________________________ActiveMSers: Staying active with multiple sclerosis

About Dave

Updated January 29, 2019

Getting Diagnosed

My first symptoms started shortly after I returned from a trip to Vietnam and Cambodia in the early part of 2005 at the age of 36. 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 and embarked on the first of four clinical trials (to date). 

Turning Nasty

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 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 even sign my own name legibly. It was blindingly fast.

As a guy diagnosed in his later 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.

The Inferno

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.

Current

For the first four years after the transplant, my multiple sclerosis unbelieveably behaved—zero disease progression, zero new or enhancing brain lesions, and 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. Alas, since 2014/15 many of those gains have started to slip. Cognitively I'm still humming at full speed (ha, I’m even hit the 99th percentile for my age on the popular brain game website Lumosity before getting bored), but my legs have rebelled. Walking without aids went from challenging to near impossible. My hiking range with a pair of forearm crutches is measured in meters, not miles, and I'm using a scooter and wheelchair for distance. Even my trusty walker is getting harder to use. Discouraging? A bit. But I keep swinging for the fences even with these latest curveballs. I am lucky just to be here.

After 5.5 years of no MS meds whatsoever, I restarted on a DMD to try to keep my disease in check and to bide time until better treatments surface. In August of 2016 I moved on to yet another DMT. And then another in the Spring of 2018. And, drum roll, I start on my 8th therapy at the end of October. 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. I still explore the world with curious intensity, having recently been to Machu Picchu, Turkey, Portugal, and Greece. And I still smite my multiple sclerosis at every opportunity. 

What does the future hold? I don't know, and can't even begin to predict. There's hope in spades with MS research, with treatments improving by leaps every year. Be active, stay fit, and keep exploring!

FUELING HOPE

From 2009 to 2014, Dave presented a message of hope at New Mexico's BikeMS event. Below are links to his moving speeches and videos about his MS and HSCT journey. 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 made its public debut at BikeMS in Santa Fe, NM, on August 24, 2013.

HOPE, PART 5—The dramatic conclusion of Dave's Hope series of videos. Guest stars include Blink 182's Tom DeLonge, professional triathete Kelly Williamson, and even NBA Hall-of-Famer Dennis Rodman (sort of). Could Dave keep all of his promises from his original 2009 speech? You bet your dollar... over a half million of them to be exact. The five minute video finishes with the start of a new chapter. Keep dreaming big dreams in brilliant color. It made its public debut at BikeMS in Santa Fe, NM, on September 6, 2014.