When I was diagnosed with ALS in May 2014 at the age of 33, my husband and I
were confronted by the same depressing facts that everyone with ALS learns:
- The average life expectancy is 2-5 years
- Before death, the person will become paralyzed, unable to talk, eat, or
swallow, and eventually lose the ability to breathe
- There is no treatment and no cure. The only approved drug extends life
expectancy 2-3 MONTHS (*note: A second drug was approved in 2017, but it has issues that I won’t bother going into…)
So what do you do with that? I was young, an athlete (I’d done a half Ironman 8
months earlier), and we had just bought a house in order to start a family.
I was already walking with a cane and my speech was slurred, but I thought I was still strong enough to pull off a super sprint triathlon, Ramblin’ Rose Chapel Hill. Since I could no longer balance on two wheels, we bought a recumbent trike. I asked my friends to support me by donating to ALS research and they raised $10,000! My best friend, Julie, and I came in last and ended up with a story in Endurance
That race transformed my perspective on the disease. I realized I could inspire
people to take on challenging races as a way to raise money for ALS – but more importantly, as a way to appreciate what their bodies can do. “Team Drea” started with 30 people, but has now grown to 150+ and raised $220,000 for ALS research. As for me, I kept riding my trike…and did a half marathon…then a marathon. Then I thought, “I’m tired of waiting around for this disease to kill me,” and signed up for 12 races in 2016 (half marathons, marathons, and triathlons), each dedicated to someone with ALS who has inspired me.
I completed that challenge, crediting my success to exercise on the trike, swimming, and the dumb luck to have a slowly progressing form of ALS.
But it wasn’t until I started working with Mischa Decker at IOBT in January 2017 that I learned I could actually get STRONGER.
What started out as 4 weeks of “I’ll give this a try,” has turned into 11 months of weekly Pilates-based PT appointments with Mischa where we work on my weak areas: core, glutes, outer thighs – and stretching places that are tight: inner thighs, calves, and feet. Top it off with bi-weekly acupuncture appointments with Austin and ooooh weeeee honey, my body feels awesome these days!! 🙂
Mischa is amazing. She is laser focused throughout our session on my positioning, which muscles should be activated, sensitive areas, and those that need attention. I know I’m in trouble when she says, “I have a crazy idea…” because that means she knows I’ve built up the strength to push just a little bit further, do just a little bit more. Which, as we all know, is where the Pilates magic happens.
The results have been incredible. I walk better (still with a walker, but who cares? I’M. STILL. WALKING). While I still fall occasionally, it’s not nearly as frequent now, thanks to my stronger core muscles. And I’m actually getting faster with swimming and triking. Such positive progress is almost unheard of in ALS.
This Sunday, November 12th, I will take on my 12th race of 2017 (27th with ALS) – the inaugural RDC Marathon in Durham. This race benefits my foundation and the proceeds will go to ALS research at Duke. My world-renown* neurologist, Dr.Richard Bedlack, is studying off-label treatments: supplements, bee pollen, fecal transplants, and other crazy things people with ALS try on their own in the absence of any effective treatment in mainstream medicine.
*His wardrobe is also world-renown, see for yourself
He is also studying cases of ALS reversal – that’s right, people whose ALS have gone away. So far he’s found 34…out of 30,000 people living with ALS in the U.S. at any one time.
Not good odds, but Dr. Bedlack’s research gives me hope in the same way that sessions with Mischa do. If I can just hang on a little longer, push just a little bit further, maybe there will be a treatment. Or my body will figure out how to repair itself.
Hey, stranger things have happened – ask the 34 people with ALS reversals…or the woman in the trike doing her 27th race.
Thank you IOBT for supporting ALS research. It means the world to me and everyone else with ALS!