Living With MS: One (Careful) Step at a Time

By: Jeri Burtchell

I remember my first relapse. Early in 1999 my legs had gradually gone numb from the bottoms of my feet up to my waist over a period of two weeks. By the time I decided it wasn’t just a pinched nerve or something else that would go away on its own, I could barely walk. Every step felt like I was waist-deep in quicksand trying to push my way forward and sinking fast.

That was 17 years ago, and all but a few of my subsequent relapses have also affected my legs. Before I began my current MS therapy in 2007, I would often spend some of my time in a wheelchair during the recovery phase of the more intense relapses.

Although I have only had two mild relapses in the past eight years, it doesn’t mean I am living symptom-free. My legs have betrayed me many times over the course of the years, and my face has become intimately familiar with all sorts of things one’s face shouldn’t see up close — asphalt, dirt, and even kitty litter on one occasion when I tripped and did a faceplant right in the cat box.

So when writing on the perils of walking, I draw from firsthand experience (much to my chagrin).

Besides legs that tire easily, I’ve also developed drop foot. Drop foot is like having your kickstand come down on your bike unexpectedly. You’re tooling along fine when your foot drops mid-stride and causes you to trip over your own two feet, like flying over your handlebars.

So I’m terrified of walking without holding someone’s arm or using a cane, rollator, grocery cart or assistive device — especially when I’m traveling. In my mind my wheels are constantly turning, assessing the terrain, the angle of incline. Judging the surface for the traction I’ll get in the type of shoes I’m wearing. It’s mentally exhausting. I literally cannot walk and chew gum if I want to be competent at either task.

The Doozie of All Faceplants

It was 2010 and my best friend Karen and I decided to take the kids to the county fair. She had her niece and nephew, and I had my youngest boy, Alix, with me. I was wearing sensible walking shoes and told all the kids I’d just watch them ride the rides so I wouldn’t get dizzy and fall. I thought I had covered all my MS safety angles.

It was the perfect day. Laughter and screams of delight filled the blue skies. We ate popcorn and cotton candy, and strolled around until the sun began to set. By that time the kids had ridden every ride except for the Zipper.

The Zipper was halfway across the fairgrounds and as we headed over there for the final ride of the day, I began digging in my purse for the rest of the tickets. With both hands occupied, my feet decided they’d had enough. My left foot dropped, scraping the asphalt pathway we were walking on and I was catapulted into the air.

I landed Tim Tebow style, on one knee for a brief second before launching face first into the pavement. I heard my sunglasses scrape the ground before flying off and skittering away. My initial reaction was “Crap! Those glasses were prescription!”, but I calmed when I remember they were just $5 drug store sunglasses. Then I could focus on what really mattered — the bloody egg-sized bump growing over my left eyebrow.

Alix and Karen came rushing to my side and helped me to a nearby bench, then ran to get some ice. I just kept asking for someone to call an ambulance. With the ice bag pressed firmly to my head, I leaned over my knees trying my best to ward off the nausea that was overcoming me.

Before long I heard a voice.

“Ma’am, can you stand up and get into the vehicle for me?”

I’m thinking to myself, “What kind of an EMT would ask me to do that without even a cursory exam?”

“Can you hear me, ma’am?”

Finally I take the ice from my forehead and look up to see it’s a clown with a big red nose and a huge upturned white grin who is asking me to step into a golf cart. I was certain I’d knocked my brain loose.

After several confusing moments while we discussed the lack of foresight or budget allocated to their first aid preparation, he convinced me an ambulance was waiting at the perimeter gate.

Karen followed behind with all the kids in tow as we rushed to the hospital.

They ran a battery of tests that included everything but shaking a Magic 8 Ball. In the end, all signs pointed to a concussion. I have never felt so sick in all my life. I had two black eyes and a huge knot on my head. When I saw the eye doctor a few days later, he speculated that my sunglasses saved me from breaking my orbital bones.

I managed to come away from that experience without any residual physical effects, but one thing is certain: I had developed a newfound fear of walking. I never leave town without my cane, and if I go to a store for a loaf of bread I’ll be pushing it around in a grocery cart. It’s not that I need an assistive device to be upright, I just can’t trust my feet.

I used to fear balance issues as my body’s greatest source of betrayal, but drop foot has taken its place. When I begin to tire or know I will have to walk for more than 25 feet unaided, I deliberately high step, figuring if I pick my legs way up in the air, my toes have less chance of tripping me up. While it might look silly, I believe it has saved me from kissing the concrete on numerous occasions.

If it gets worse I think I’ll look into a brace, but for now I’m taking MS one (careful) step at a time.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Adapting to My Limitations and Doing a Marathon Anyway

By: Stacie Prada

I walked a full marathon. I didn’t think I’d ever be able to say that. Before I was diagnosed with MS, doing a marathon was something out there that I thought I would do someday. After my MS diagnosis it seemed like a goal I would have to let go.

It’s all the more amazing and rewarding to me now since I wrote in my Life List post I had accepted that doing a marathon was something I wouldn’t do in this life. I thought marathons required that people run them, and my MS symptoms cause too many injuries when I run long distances. Surely 26.2 miles was out of the question now that I had MS.

Drop foot caused me to run off kilter and consistently brought on hip pain and injuries that took months of physical therapy to heal. When I complained that jogging hurt me but I wanted to do running events, my physical therapist responded, “You need to decide if it’s worth it.” She was wise to let me know that it was a choice I was making. It was then that I realized running long distances wasn’t wise for me anymore.

I decided to focus on other activities I enjoyed including walking and hiking. It was after a ten mile walk that a friend suggested I do the Portland Marathon where they encourage walkers to participate. I was immediately excited and signed up in January for the October marathon. Two friends also signed up, and we put together and followed a marathon training program that would allow us to not only do the marathon, but train in a way that would have us prepared and able to enjoy the entire adventure.

We usually upped our distance one mile per week. With 36 weeks to train, we had plenty of time to prepare. Internet sources educated us on how to train, and that was terrific. I’m sure we would have over trained if we’d come up with our own training schedule. We walked one long walk per week and did two to three other workouts each week of yoga, walking or gym cardio and weights. Sometimes we were ambitious and would increase our miles more than one mile per week. But we checked in with ourselves and each other throughout the journey to make sure we weren’t pushing ourselves too hard. The threat of getting sick or injured was enough to keep our drive in check.

We did have some physical challenges to address along the way. New shoes and socks, icing our ankles and feet after walking, coating our feet with Vaseline before walking, and staying hydrated helped us perform beyond our hopes. We started our training hoping to finish the marathon in less than the eight hours required. By race day we felt optimistic that maybe we could finish in six and a half hours. By the end of the marathon we were ecstatic to finish 20 minutes earlier than we ever could have hoped!

I chalk our success up to pacing ourselves, allowing enough time to train, making steady progress, paying attention to our bodies’ needs, and sharing the journey with good friends. We promised ourselves we would make sure we had fun every step of the way, and we did!

It’s empowering to accomplish goals even when I do them differently than I’d imagined. MS is full of adjusting expectations for the future, and modifying how I do something hasn’t diminished the enjoyment and sense of accomplishment. It’s made me appreciate the experience all the more.

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