Having been a “solo act” for a little over a week, I’m ready to – knock on wood – announce my new status! The occasion of our break-up was simple: in a miraculous burst of post-DBS reality, I came to the realization that my shiny blue walker had outlived his usefulness. At its genesis, our relationship stood a marriage of convenience. My inner stubborn mule protested his attentions – until it became abundantly clear my new friend offered benefits! The rock by my side, he protected me from a precarious loss of balance, carried my packages…and my puppy, and offered a spare seat on a desolate stretch of street.
Now that I’ve left my walker by the wayside, I find myself in a strange new reality. At times, I reach for him as I leave my apartment. After all, over the course of 2+ years, his constant companionship became a force of habit and, I’ll admit, a bit of a safety blanket. Life without him may be strange but it’s neither cold nor empty. Not quite used to navigating the local terrain without my hot wheels, I instinctively head towards ramped walkways when stairs have pleasantly become an option. Mind you, my gait still has its quirks and I entertain an unfounded concern that the full force of my involuntary movements will return.
Now that I’ve gone solo, there’s no turning back. Indeed, in a bizarre psychological conspiracy perpetuated by my feet, my brain and my “ex,” a dalliance with my walker actually makes my Dystonia worse!
Posted in Life
Tagged Activa neurostimulator, DBS, DBS therapy, Dystonia, Independently mobile, Involuntary movement, Medtronic DBS Therapy, Mobility, Movement disorder, Neurological disorder, Stairs, Walker, Walking aid
As I made my way to my first DBS programming session during the chaos marking morning rush hour, I was abruptly reintroduced to the inhumanity inhabiting my fair city. Hardly the picture of health, I stood braced against my walker, a colorful flowered scarf sculpting my recently shaven head, watching taxi after off-duty taxi unceremoniously sail by me – patently ignoring my hand wildly flailing through the air in an act of deliberate motion having nothing to do with my Dystonia. I couldn’t help but surmise that cab drivers hold no interest in attending to my walker. Where was Sir Galahad, galloping up Third Avenue to rescue me on his black and white checkered horse majestically draped in yellow?
I concluded that I needed to park my walker at the curb behind me and hail a taxi as a solo act. Of course, as soon as I turned towards the sidewalk, my gallant appeared, sharply braking beside me. Putting his fellow cab drivers to shame, he whisked my walker into the trunk with aplomb, After all, it doesn’t take Mr. Universe to manipulate a few pounds of folded metal.
I hold abject disappointment in NYC’s private transportation corps, which, for a pretty penny, is my first line of defense against the perils I face using public transportation.
Posted in Life
Tagged Cab, Disability, Dystonia, Health, Movement disorder, Neurological disorder, New York City, Public Transportation, Taxi, Urban Transport, Walker, Walking aid
For those wondering how the prospect of two “awake” brain surgeries becomes palatable, let’s consider my relentless left foot, which seizes every small step as an opportunity to insist on an arduous detour. Walking takes on a whole new “twist” when the ever-present intervening destination is your next forward-intending movement. Even the shortest sojourn with my puppy becomes a true labor of love.
The upper echelons of the thermostat – even relatively moderate temperatures – stand amongst my triggers. At the onset of spring, exhaustion settles in for a multi-season stay, sentencing me to a summer of heavy breathing punctuated with plentiful naps. Ambulating ceases to be a means to an end and becomes an all-consuming focus, draining every ounce of my energy at the speed of light. As an added bonus, my tortured summer strolls invite back pain to settle in for an extended stay.
Surgeries anyone? Sign me up!
Posted in Life
Tagged DBS, Deep brain stimulation, Dystonia, Fatigue, Force, Health, Involuntary movement, Movement disorder, Neurological disorder, Puppy, Puppy love, Stress, Summer, Walker, Walking aid
With my walking in a state of disarray, I’m on the prowl for creative ways to count my blessings. My challenge is rather monumental. “Seek and you shall find” takes on a whole new meaning when it comes to discerning the silver lining in Dystonia.
I’ve discovered one “perk” traipsing the city streets with my puppy. Courtesy of the deterioration in my gait, our daily walks stand as true workouts, enabling me to indulge my sweet tooth without penalty. The collective force of my involuntary movements simulates a walk in a wind tunnel, leaving me breathless in the span of a few short blocks for a potent bout of cardio.
Convinced I’m burning calories with every laborious step, I entertain bizarre satisfaction struggling against my unruly muscles. In a nod to my inner obsessive-compulsive, I’m forever recalculating the territory I cover as I push forward to go the distance, awash in determination to ace at least one super-sized “power walk” each day. Another “perk” worthy of mention: nailing a generous swath of city blocks ensures I’ll be sleeping soundly that night.
I may count my victories in the slow lane but this sure beats counting calories!
In the company of my pokey little puppy, I’m sure you can guess who’s been stealing the show! I’ve happily abdicated top billing to 12 pounds of furry delight while my metal co-star finds herself demoted to disgruntled supporting actress.
As life hairpins a 180-degree curve, I’ve discovered that those who notice my traveling crew assume my walker – purple and hot pink Sherpa ensconced snugly on the seat – serves at my puppy’s pleasure. Ironically, after a lifetime battling self-consciousness, I’m proactively advertising my need for a walking aid without a care.
Meanwhile, my Dystonia has taken a back seat to little Ellie as I traverse the miracles – and responsibilities – of motherhood. Housetraining poses a particular challenge when our summer strolls evoke the last leg of a marathon. As the thermostat ramps up, so goes my Dystonia. I trudge along the city’s streets drawing on every ounce of energy I can muster, braving sweltering weather I formerly shunned. When there’s no juice left, my walking devolves into a game of shuffleboard played out in a cloudy haze. Anything for my puppy, who stands infinitely more important than the “inconveniences” wrought by Dystonia.
The moral of my story: The very best pick-me-up is to step outside ourselves and divert our attention to the world unfolding around us, rising to the occasions life presents.
Within my neighborhood, I rule the sidewalks in the company of my slick, 4-wheeled sidekick. Venturing onto public transportation pitches me into the world of “handicap accessible.” To my utter dismay, the 86th Street subway, a hub of activity and my home base, fails to accommodate. The “convenience” of the express train perpetually looms a foreboding 3 flights of stairs away.
So what’s the problem? Isn’t this where the dashing knight in shining armor comes galloping onto the scene to rescue the damsel in distress struggling with a precarious descent while juggling 5+ pounds of folded metal? Plenty of burly armed men bustle past me…not to mention a choice selection of NYC yuppies. Adamant about requesting assistance, I’ll patiently await my gallant to little avail. Seems this dystonia damsel requires a megaphone to motivate an endless supply of walking testosterone pursuing their destinations with single-minded focus.
Life is a trade-off and my solo adventures arrive bundled with a steep price. I find myself recalibrating my notion of “independently mobile” to accommodate the human and technological assistance I’m helpless to escape.
In 2013, I took a summer “vacation” from Dystonia! This year, I packed my Dystonia – along with my cane and walker – to head to destinations north of the U.S. border. In case you’re wondering, I left my ego and my pride safely tucked away in my apartment. This was my first travel adventure with walker in tow and I was determined to serve patriotically as the penultimate trooper. Certainly, I’d no intention of defining this sojourn by my special needs.
The advance forecast was smooth sailing, my only trepidation the scents that threatened to assail me. Little did I expect a daily roller coaster ride rife with spine-tingling bumps and spur-of-the-moment curves.
Old Montreal offered a charming tangle of narrow cobblestone streets and squares lined with bistros and shops inhabiting the shadows of a modern city. Calling the terrain challenging is an understatement when my walker bounced over every square inch of cobbled friction. Swallowing my fatigue, I plodded along at my own measured pace, feeling a bit like Moses parting a sea of pedestrian traffic.
Unbeknownst to me, Montreal was merely my “practice run.” Our next destination, Old Quebec City, presented a veritable bobsled track snaking along the bank of the St. Lawrence. I found myself chasing my walker down descending routes, then huffing and puffing the upswings. Rain showers forced me to navigate single-handedly, a swift kick to my stability. I wasn’t the only one aching: my poor walker survived worse for the wear, even requiring an impromptu French Canadian repair!
A series of small victories over an endless obstacle course taught me an important lesson about weathering life’s bumps and bruises. While my sojourn was physically daunting, I brokered a treaty with my limitations and adjusted my future travel expectations.
Posted in Life
Tagged Balance, Conditions and Diseases, Disability, Dystonia, Health, Independently mobile, Mobility, Montreal, Movement disorder, Neurological disorder, Old Montreal, Old Quebec City, Quebec City, Walker, Walking aid
The latest experimentation with my meds sent my walking into a funk, leading me to a newfound appreciation of why I tolerate their medical mischief. It also rendered me significantly less independently mobile – in need of what I shall call a “new friend” – landing me smack in the middle of a vigorous debate between my good sense and inner stubborn mule. Seems my resistance to special assistance is alive and kicking. Notwithstanding 40+ years living with Dystonia, I cling to a foolish insistence I’m no different from everyone else.
As a cantankerous attitude sought to assert itself, complications immediately ensued when I discovered the surprising rewards of life with a walker. Let’s start with my ability to perch comfortably at random street corners – not a bench in sight – for a much-welcomed respite. It dawned on me, not only needn’t I fear wiping out from an unruly twist of foot…or exhaustion…but I now enjoy a custom seat at any outdoor venue. Further, thanks to my visible aid, New Yorkers have become more generous with their assistance.
Where I expected shock from friends, I encountered awe over the creature comforts at my fingertips. Indeed, they quickly jumped on the bandwagon, appropriating space for handbags and parcels – triggering an onslaught of speculation about the moneymaking potential of my new adventure. Inject a flash of ingenuity and my walker may very well present a portable gold mine.
As for me, I often mistake myself for a mother out for a spin with stroller in tow…only this femme is walking herself!