Editor’s Note: The following post was written by Dagmar Munn for her ALS and Wellness Blog. The original can be found here. MDA republishes blog posts about life with ALS from the perspective of those who know it intimately: people with ALS, their family and friends, researchers, advocates, therapists, policymakers and others. To become a contributor, email strongly@mdausa.org.
My ALS symptoms began in 2010 and showed up in my feet and legs. Normally strong and coordinated from years of gymnastics, fitness classes and even dancing on stage in community theater productions, my lower limbs suddenly became weak and unreliable. Not falling came to be my number one priority as simply walking across the room demanded my full attention. Suffice to say, my movements fell into the less-than-graceful category!
One day I’d wake up with tight muscles, the next day they were floppy and every so often my right knee buckled and gave way as if I just stepped into a hole. Ironically in my dancer’s-mind, the movements felt vaguely familiar and I’d give them names: Oh today, I’m walking like the Scarecrow from the Wizard of Oz! Oops, now I’m doing the Tin Man!
I had a pirate walk, a zombie walk and even a pretty good impression of a gymnast trying not to fall off the balance beam. One day while randomly searching the Internet I stumbled across a video that had me laughing all the way through: Ministry of Silly Walks; a vintage 1970s comedy sketch by Monty Python’s Flying Circus. That’s me! I exclaimed. That’s me! Yes, it’s probably very “un-P.C.” to find humor in a mockery of silly walks but…who else than a person with ALS, could fully appreciate how well John Cleese performed and how hard it must have been to do? Besides, isn’t one of the key principles of a resilient life – – “To have the ability to laugh at oneself?”
My neurologist sagely advised I find other things to laugh about and recommended that I get a walker.
Officially, it’s called a Rollator. Walkers are those bare-bones, aluminum, wheel-less, standard hospital-issued devices mostly used by those recovering from hip or knee surgery or, little old ladies in nursing homes.
I sat and had a hard look at my Rollator – – and it looked back at me. It was black, had four wheels, could fold up and reminded me of little old bag-ladies pushing theirs piled high with clothing while shuffling across busy intersections in downtown Chicago. I knew I’d better invoke another key principle of resilience and “Change My Mindset!”
First, I decided to accept the fact it was an assistive device meant to help me walk better and maintain independence; not something that defined me or was a transition towards possible demise. In gymnastics we always used smaller versions of equipment to help practice skills and gain confidence, so I saw my Rollator as a pair of mini-parallel bars on wheels. It would help me maintain a perfect dancer’s posture; roll along with each step and to – – finally relax!
My Rollator doesn’t have a name. I haven’t decorated it with flowers, stickers or a clown horn. OK – – I have a bell. Besides helping me walk tall it’s become part of my daily exercise routine. I stand directly in front of a sturdy chair with the Rollator positioned in front of me – – wheels locked in place. I can then do any number of simple standing yoga or Tai Chi movements knowing that if I lose balance, the chair is behind me and the Rollator is an easy grab in front.
Now for some “Rollator Etiquette”- – No, not for ME but for all YOU non-Rollators out there.
Number One: I’m not pushing a beverage cart! When we chance to meet up and stop to chat, please resist the urge to cross one foot over the other, place one hand on my Rollator, the other on your hip and nonchalantly lean in as if you’re at the local bar. The reason we’re both balancing is my death-grip on the hand-brakes! Next time, I’m dumping us both!
Number Two: The next time you park your car in that cushy area right next to a handicapped parking spot thinking you’ll avoid door-dings by encroaching onto the painted lines – – don’t be surprised to return and find the new pin-striping on your car is at the height of my handlebars!
Number Three: Here’s a shout-out to drug store cashiers everywhere. I’m using a Rollator for a reason! So if, when I’m next up and have to traverse the space from where I was waiting patiently to arrive at your counter area – – it will take me a few seconds longer than your other customers. Simply hollering, “Do you have your CVS card?” – – Will not make me go faster! I’ll get up to you when I get up to you.
Now that four years have gone by and I’m still pushing mine, I’ll have to admit that I imagine myself a bit of an expert on the topic of Rollators. Driving by a yard sale I can spot one and pretty much I.D. make, model and age.
Just like race cars, the best designs seem to come from Europe. And here’s a little secret – – the measure of quality is in the wheels – – the bigger the better. Think “Monster Trucks,” with jumbo wheels that roll right over junked cars and other obstacles. A Rollator fitted with eight-inch wheels can take on lumpy grass, gravel parking lots and cracked cement ramps with the ease of an all-terrain vehicle.
So four years later, “Do I still like my Rollator?”
You bet I do! In fact, I have three! One in the car, one in the house and one on the back porch – – it all makes for seamless travel from one end of the property to the other. Just call me the pony express of Rollators!
