Traveling with muscular dystrophy means traveling at your own gait

Traveling with muscular dystrophy means traveling at your own gait

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Rear view of a mature woman looking at traditional windmills against a cloudy sky while traveling with muscular dystrophy.
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©jose manuel castillo/EyeEm / Adobe Stock

Traveling with muscular dystrophy means traveling at your own gait

Traveling with muscular dystrophy is not easy. Nevertheless, Judy Richardson refuses to stop doing what she loves, traveling at her own gait.

 Travel is the best way to be lost and found at the same time.

Brenna Smith

Before my body began to fail me, I had traveled to 29 states in the USA and 20 countries. But in 2008, during my first Fulbright in Tetevo, Northern Macedonia, I developed a limp. Back home in Richmond, Virginia, my physician was puzzled. My legs were even; my hips didn’t hike. After two electromyography (EMG) tests — about as painful a procedure as I had ever endured — I was told I had a late-onset form of muscular dystrophy (MD).

The muscles most affected in limb-girdle muscular dystrophy (LGMD) are those surrounding the shoulders and hips, with nearby muscles in the upper legs and arms sometimes also weakening with time. Muscular Dystrophy Association

Most people know about Duchene MD, which puts male children in wheelchairs at a young age. Jerry Lewis used to run TV marathons for those kids. My condition, diagnosed when I was sixty-three, weakens muscles in later life.

I accommodated by using a hand-carved cherry wood staff; I received many compliments on its beauty, but when it got to be too heavy, I resorted to a cheap one made from balsa wood. For travel, I bought one that folded into three pieces so I could easily store it on a plane. When I couldn’t walk easily, my husband bought me a three-wheeled bike and I began to jog in a swimming pool.

Seven years, twelve states and nine countries later, I was relying on a three-wheeled walking frame. I chose a sporty model in bright blue, easy to navigate, and fold. I took it with me when I visited Skopje in September of 2018 to oversee two doctoral defenses. To enter the university, I did battle with the uneven, often puddled, walkway to the front of the building then the very steep slope into the building. My favorite taxi driver got me wherever I couldn’t go on my own wheels.

“The world is a book and those who do not travel read only one page”

Augustine of Hippo

 

After Skopje and before flying back to the USA, I visited Barcelona, Spain. This glorious city had been on my travel list ever since I read The Shadow of the Wind by Carlos Ruiz Zafón. I wanted to walk some of the mysterious streets he described, hoping to discover more about Catalonia.

I arrived after dark, too tired to pay attention to the route my driver took to the hotel. Tomorrow, I thought, I’ll find my way around. The next morning, when the hotel clerk assured me that walking to the tourist office would be easy, I knew he was thinking of how easy it would be for him. I asked him to call me a taxi.

“People with disabilities are at much higher risk of unintentional injury than the general population.”

Community Health Strategies, New York

 

The cabbie stowed my rollator in the trunk and off we went. I tried to note landmarks but got hopelessly confused as he wove through so many tiny streets. I lost track of where I was in relation to the hotel. He let me out near the Catalonia Plaza, across a busy street from the tourist office. The cross light apparently changed to WALK about once every 15 minutes. Once across, I found that the tourist office was located down a set of 20 steps. I could see a lift at the bottom of the stairs but it wasn’t working. My only other choices were either an up or a down escalator.

I stood calculating the danger of holding my bulky device while riding the down escalator and decided that was a bad choice. But maybe I could hang onto the stair railing with one hand and the rollator with the other. I was on step two when I realized what a bad idea that was. I was stuck, terrified to go back or forward. My arms were trembling; I was losing my grip on both the stair rail and my rollator. Another tourist arrived, took one look at me, and whisked my fifteen-pound appendage downstairs as I clung to the railing and stepped sideways to ground level. Embarrassed but grateful, I thanked her profusely.

Why do I persist in thinking I should be able to do what everyone else can when traveling with muscular dystrophy? Why am I surprised and ashamed when I can’t?

I stood in line for an hour before I reached the ticket agent. My legs were jelly. Collecting the prepaid Articket that would get me into several museums took two minutes. And then: how to get back up to the street? The ticket agent left her booth and carried my rollator up the steps. She gave me directions to the MACBA (Barcelona Museum of Contemporary Art), a short distance away. I didn’t trust her definition of  “short,” but seeing no taxis, I started out.

The Plaza had been quiet when I arrived, but now held throngs of people. Many were wearing Catalonian flags draped across their shoulders. Loudspeakers blared, people cheered and pushed. They were protesting for greater autonomy in Spain. Their passion was contagious but overwhelming.

Thankful for the triangular frame protecting me from the crowd, I crossed the street that led to the MACBA, went left for a block, and hit a human barricade of police, who were guarding against possible riots. I showed my Articket and said, “MACBA.” No, I couldn’t pass.

I didn’t think I looked much like a protester. My silver hair and pretty obvious touristy demeanor were, I thought, a give-away. Obviously, I wasn’t quick on my feet or likely to pose a threat. But, no go. I sighed, said “gracias” and turned around. I went back towards the square, pushed through the masses, and turned left towards where I thought my hotel was located.

That left turn marked how I got lost.

An hour later I was still wandering. I asked several policemen for directions. Only one spoke any English and I couldn’t understand what he said. I know now that, at one point, I was almost at my hotel but a sign had obscured my view. I went in another direction. I tried waiting for a taxi but a policeman waived me on because taxis were not allowed to stop.

“If you get tired, learn to rest, not to quit.”

Banksy

 

Finally, I came to a sidewalk café and plopped into the only free chair. I ordered a coffee and my first pinchos ever. Sort of like tapas, these are small pies filled with a variety of meats and/or vegetables. I sat with my feet propped on the opposite chair watching passers-by and resting.

An hour passed. I had stopped sweating. My legs weren’t trembling anymore. I showed the waiter a card from my hotel.

“That way” he pointed down the street.

I stood. My muscles seized. But I was on my feet so I pushed forward. Two blocks down, I spotted a taxi pulling to the curb to let off a passenger. “Wait!” I called. The driver seemed startled as I folded my rollator, pushed it into his backseat, and climbed aboard. I paid close attention to the route he took. When he charged me three euro, I gladly gave him ten.

The iliotibial band (IT) runs along the lateral or outside aspect of the thigh, from the pelvis to the tibia, crossing both the hip and knee joints. The IT is an important stabilizer structure of the lateral part of the knee as the joint flexes and extends. Benjamin Wedro, MD, FACEP, FAAEM

 

I limped into the lobby. In my room, I collapsed. I had pulled out the Iliotibial band in my left hip. For the rest of my trip, I experienced searing pain every day. Thank goodness for the icy-heat patches and Kinesio tape I had tucked into my suitcase. I adorned my leg with pink Xs stretched from hip to ankle, a not-so-professional job but somewhat pain-relieving.

The next morning, Sunday, I rolled to the Plaza four blocks away, fighting the rough sidewalks. Once there, I couldn’t locate the Hop-On Hop-Off bus because it had been rerouted due to the ongoing protests. The first stop, the one where I needed to board, had been eliminated. I watched the taxis fly past. Finally, after observing how others were handling the situation, I realized I had to wait at the corner — in the bus lane —and wave my hands while praying that no bus actually needed the lane before I snagged a taxi.

Traveling with muscular dystrophy means traveling at your own gait Click To Tweet

A 10-Euro taxi ride later (the cost of my entire Hop-On Hop-Off pass), I arrived at the Basílica de la Sagrada Família for my pre-arranged tour. Even in this off-season, people crowded around guides and voices echoed in the cavernous space. Light from stained glass windows shed gorgeous color onto the cathedral floor. Antoni Gaudí’s presence was everywhere. The tour was fascinating although our guide rushed us along, me pushing as fast as I could to keep up. We concluded the tour at the Passion Façade, sculpted into the exterior wall.

The exit turned out to be a very steep ramp. Just as I was thinking it would never pass code in the US, my rollator succumbed to the incline and collided with someone ahead. She yelped. I lost my footing. I couldn’t get to the railings because of so many people on either side of me.

“Help!” I cried.

Two sturdy people grabbed for me before I went down. They escorted me to level ground. After my wild ride, I thanked my saviors and offered to treat them to a coffee but they declined. I did have one myself, though, along with an ice cream. I figured I deserved the treat.

I caught the next Hop-On Hop-Off. From 5 o’clock to 8:30, I rode around Barcelona. From my seat on the bus, I enjoyed Gaudí’s playful and colorful influence everywhere, such as Casa Batlló’s famous “skull and bones” balconies and the dragon fountain in Park Güell. I hopped off at the Museu Nacional D’Art De Catalunya but, by the time the attendant understood I needed a handicap ramp rather than a toilet, I had only 20 minutes to tour the Dali exhibit before they closed.

I sat on the museum patio enjoying a coffee and relishing the panoramic views of the city before I caught the bus back to town. By the end of the day, I had seen many Catalonian flags draped over balconies. Because the protests were still going on, the bus stopped before we reached the Plaza. So I walked again, about 30 minutes, back to my hotel.

On Monday morning I took a taxi to the Museum of History of Barcelona. The driver let me off at a side street and told me to walk up “a ways” and turn left. Not a long ways but a steep incline later, I found the museum. They were just closing, at 10 AM, because the electricity had gone out. Maybe, the curator said, I would like to visit the Museu Picasso “just across the street” instead.

I followed her directions across the street, but after walking for several minutes, I knew I was lost. I found signs; I followed them (at least I thought I was following them). Eventually, I discovered the museum, built within medieval mansions, in the Old Town of rough, narrow alleyways. Picasso, as always, was marvelous. After leaving, I got back to the main street fairly easily and caught a taxi back to the hotel.

That evening, the night clerk arranged transport for me to the train station the next morning. He made sure I would get help with my luggage for my trip to Bilbao, which was at one time the major seaport for the North of Spain. After three days of demanding way too much of my muscles, riding the train was a dream! I dozed, enjoyed the views, and rested my body. I slept well that night in Bilbao.

On October 3, I hopped on the Bilbao tourist bus for a lovely ride around the town. When I arrived back at the main stop, I went around again. Since the Guggenheim Museum was mercifully only steps away from the Hop-On Hop-Off, I went there next. The building of glass, titanium, and limestone is all curves and angles, with a view of the La Salve Bridge. I especially enjoyed Maman, a sculpture by Louise Bourgeois that looks like a giant spider, and Anish Kapoor’s sculpture of giant bubbles. That evening, I propped up and iced my leg.

Photo of Judy Richardson, who has muscular dystrophy, sitting in their Zoomer chair.
Caption:

Photo of Judy Richardson in their Zoomer chair.

Credit:

©Judy Richardson

 

On October 4, I took the local bus to San Sebastian, a resort town for many wealthy Europeans as well as a delightful Basque city. My guide thoughtfully slowed his pace for me as we walked around the Old Town. We ate Basque pinxtos (the correct spelling in Basque country) while seated near the lovely church at the end of the square.

Going to and from San Sebastian on the bus was a tour in itself. All that marred the trip was retrieving my walker, which had been stored in the bus luggage compartment. Because it was pushed far back with other luggage piled on top of it, I had to climb into the space. I had barely scrambled out backwards and righted myself onto the sidewalk when the bus pulled away. I was thankful not to be going back to San Sebastian as cargo.

On my last day, I visited the Old Town of Bilbao. The tourist bus cannot enter this area, accessible only by walking. As with many Old Towns in Europe, the cobblestones and dirt alleys were not disability-friendly, although I realize that an “Old Town” isn’t old if it has been paved with asphalt. But inside the Euskal Museum, which shows the history of Basque geography and culture, I was thankful for the ramps and elevator.

I haven’t been everywhere but it’s on my list. Susan Sontag Click To Tweet

That last evening in Spain, I had to use my walker just to get from the bed to the bathroom not five feet away. In the early morning of October 8, I left for home from the Bilbao airport. Once home, I went directly into physical therapy three times a week and two years later am still in therapy. I have developed chronic bursitis; the IT band will probably never heal.

Seeing Barcelona and Bilbao cost me dearly. I love that I discovered some of the magic Zafón describes, but my muscles have atrophied faster than they would have if I had not gone. I am now looking at wheelchairs.

I have learned to keep my disability at bay with prescribed therapy and approved exercise, as I try to teach my body to use muscle more effectively. When I overtax or tear muscles, I am in for a lot of pain. Nevertheless, I refuse to stop doing what I love. I intend to keep Traveling with muscular dystrophy but at my own gait.

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Article by
Judy Richardson

Judy Richardson does not give in to the fear of falling. She refuses to stop doing what she loves, especially traveling, just because she has to rely on mobility devices. She travels at her own gait and expects that being lost and found is part of the journey. She lives in Richmond, Virginia.

Caption:

I have learned to keep my disability at bay with prescribed therapy and approved exercise, as I try to teach my body to use muscle more effectively. When I overtax or tear muscles, I am in for a lot of pain. Nevertheless, I refuse to stop doing what I love. I intend to keep traveling but at my own gait.

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