I was diagnosed with multiple sclerosis (MS) at age 37. It was 2006 and I unwittingly entered the octagon to face off against the five stages of grief. Dave vs. DABDA. Spoiler: It wasn’t pretty. It never is.
DABDA = Denial. Anger. Bargaining. Depression. Acceptance. The five stages of grief.
Denial worked wonders for a couple days until it became pretty clear I didn’t have a pinched nerve or Lyme disease (and you thought you were the only one). Anger threw me an arm bar and had me tapping out in less than a week. Bargaining? I had no chips to bargain with. Depression had me throwing a rager of a pity party. But then I discovered few people liked going to pity parties because they’re major buzz kills. That just left me with acceptance.
But how could I accept the diagnosis of a disease that threatened to erase every active passion I enjoyed? I played tennis, basketball, baseball, and soccer. I was a snowboarder, cyclist, hiker, and Frisbee golfer (OK, I admit I wasn’t that great at regular golf). But an MSer—an active MSer? Me?
A decade ago, the MS landscape on the internet was a depressing tangle of woe-is-me blogs and dire predictions. The more I researched, the more I didn’t like what I found. The robust and varied support networks available in the MS community today were in their infancy or simply didn’t exist yet.
So, it got me thinking: Why couldn’t I be that active MSer? And if I was having problems coming to terms with this new normal, I reasoned other like-minded, active misfits living with MS might be struggling, too. So the week I was officially diagnosed, I also started ActiveMSers.org, a website to help and motivate others with MS to stay active — physically, intellectually, and socially — regardless of disability.
Since then, I’ve made it my goal to practice what I preach. I faithfully exercise most days with stretching, cardio, and strength training.
About 1 in 20 MSers have an aggressive form of the disease, and I won that unfortunate lottery. I started using a walker three years after I was diagnosed, and today I employ a host of aids to get around. So how the heck can I run a website promoting MS fitness, much less work out so vigorously? It comes down to following the five straightforward stages of exercise enlightenment: my MS exercise hacks. I’ve developed these over the years with the help of MS physical therapists, professional athletes, fellow active MSers, and a healthy dollop of experimentation.
5 stages of exercise enlightenment
1. Find your exercise mojo
I know it’s there. You know it’s there. That charmed power inside of you that wants to get fit. No exercise program is going to succeed in the long term unless you find that mojo. While I’ve gathered over 100 MS exercise studies for your reading pleasure on ActiveMSers’ forums, I’m not going to lecture you about how awesome exercise is for MS because you already know that. I’m not going to guilt you into exercising, either. No, you have to want it. You have to will it. Once you find your inspiration to exercise, you’re well on your way to the next step.
2. Adapt to your limitations
Yeah, I know you have MS, which automatically makes it harder to exercise. Maybe it’s fatigue, crummy balance, bad eyesight, wonky legs, or [fill in the blank]. I get it. But unless you’re completely bedridden, there are ways to exercise your body with adaptations. Yes, you might look a bit goofy flailing your arms doing seated jumping jacks — I know I do. But you’ll get over it in time if you can just stay focused on the goal. Your health is too important not to.
3. Channel Beast Mode
When you exercise, don’t simply go through the motions. Don’t only give half of your best. You’ve carved out valuable time in your day to work out, so maximize it. The most efficient way to get there is to switch onto Beast Mode. Beast Mode isn’t just high effort, serious training. It’s the I-dare-you-to-try-and-stop-me attitude that can conquer anything, including MS. Believe it. Personally I’ve found that loud music and cursing help me push past the pain, and so have exercise researchers. (Sorry, Mom, I’m really not talking about you!)
4. Strive for consistency
Let’s get this out of the way right now: You will fall off the exercise wagon at some point. We all do. And that’s OK. The trick is to get back on it. Don’t let a few days (or a few weeks) of downtime destroy the goodwill you’ve built with your body. This is a lifetime commitment, just like this crappy disease, barring a cure. Start small. Commit to stretching for 10 minutes a day. Add in 5 minutes of cardio. Then some weights. Hit a relapse speedbump? Just repeat steps 1 to 3: Rediscover your mojo, make new adaptations, and then crank up Beast Mode. You can so do this.
5. Celebrate accomplishments
I’m not talking about cracking open a beer and a bag of Cheetos after every exercise session. But getting fit is big friggin’ deal when you have multiple sclerosis. Be proud of what you’re doing and accomplishing. It’s not a fluke that your fatigue is diminishing, or that your “cog fog” isn’t as bad as it was, or that you can now touch your toes despite your tight hamstrings. (My story on that considerable accomplishment here.) No, this is you. This is all you. Acknowledge that. Celebrate that. If that means beer and Cheetos once in a while, I’m cool with that.
I’ve got a motto: MS is BS — multiple sclerosis is beatable someday. And when that day comes, we need to have the healthiest bodies and minds possible. Exercising is a huge part of that. Please join me on this journey. Be active, stay fit, and keep exploring!
Dave Bexfield is a writer and founder of www.ActiveMSers.org. He founded the website in 2006 to help, motivate, and inspire those with multiple sclerosis stay as active as possible—physically, intellectually and socially—regardless of physical limitations. Dave’s efforts have been championed by the New York Times, featured in the Wall Street Journal, and highlighted on the cover of the National MS Society's Momentum magazine. Armed with attitude and a pair of forearm crutches, Dave continues to travel the world with his wife of 24 years, Laura. He lives in Albuquerque, NM.