Last week I experienced health care at its finest in my own peculiar version of one-stop shopping, heading to the hospital for a day of consultations flowing from Psychiatrist to Fellow to Attending Neurologist to Physical Therapist. Now that’s what I call patient-centered care, yours truly the star of the show! With Movement Disorder, one’s neurologist is often the tip of a medical ice-burg floating down a river teeming with doctors and therapists. Why shouldn’t treatment resemble a “power trip” to the mall to score a broad swath of retailers?
Pushing our “main squeeze” to the side, chronic illness ushers in a host of ancillary issues shaping quality of life. We confront side effects from our meds, the practical repercussions of a body gone wild, a seesaw of energy and fatigue…not to mention those emotional highs and lows. Assembling our go-to team requires us to work as our own Offensive Coordinator, searching out appropriate therapies – hopefully with providers who take our insurance – in an effort to quarterback a game plan aimed at gaining elusive yards as we journey up the field. The big “Hail Mary” may lie outside our control but we gun for those small victories.
Getting to the nitty-gritty of my “medical spree,” what a treat to bask in the rays of a professional crew evincing an understanding of a slew of complicated relationships – Dystonia the hub driving the wheel. They proffered care with concern, proactively addressed side effects rather than prescribing recklessly, and showed due respect for the knowledge I contribute…after all, I qualify as my own expert witness! Meanwhile, I enjoyed a bout of medical room service where the farthest I strayed was a jaunt down the hallway to display my decidedly Dystonic swagger. If only I could coax this symphony of place and time out of follow-up therapy appointments. When health care gets things right, it’s really rather incredible how much “simpler” our lives could be.
A great big thank you to the Bachmann-Strauss Dystonia Center of Excellence at Beth Israel, putting a capital “P” in Patient-Centered Care and addressing our multi-disciplinary needs!
For more information on Dystonia and Parkinson’s Centers of Excellence, check out the following links:
Posted in Health
Tagged Chronic illness, Dystonia, Health, Medication, Movement disorder, Neurological disorder, Neurological examination, Parkinson, Parkinson's disease, Tardive Dyskinesia, Tremor
We’ve all read inspirational stories of triumph over physical or mental challenge…or met people who believe they were given their illness for some higher if unknown reason. While I undertake the utmost admiration for these points of view, I don’t find a grand design in my circumstance beyond writing this blog…and I wish I’d never encountered Dystonia in my bout of chance in our family’s genetic lottery, whether stronger for this experience or not. One of my greatest battles is the “Useless Why” that relentlessly besieges me.
Over a span of 40+ years living with Dystonia, I’ve frequently traveled to the Land of Why: Why me? Why Dystonia? Why the unnecessary obstacles? Of course, these are dead-end detours in pursuit of unanswerable questions, pointing me in the useless direction of life’s random unfairness. My daunting “whys” deliver a knock out left hook to productive focus as I grapple with comparisons serving no practical purpose.
I’m not alone in a wasteland that swallows more voraciously than quicksand. The “Useless Why” game is intrinsic to human nature. Our instincts compel us to seek explanations for senseless adversity or what we perceive as worldly injustice. Check in with your internal barometer – “Useless Why” plays out on many levels: Why is my hair insistently frizzy? Why can’t I find a more satisfying job? Why doesn’t my child behave? Why haven’t I met Mr. Right?
Amid my searing search for answers to life’s more perplexing questions, I’ve found the antidote for “Useless Why” resides in “Useful How” – the tactics we embrace to dig ourselves out of our holes and lead purposeful lives. So make a plan of action and trash those Useless Whys!
Nothing like a massage to tense up those muscles!
Now, I’m not talking about a rough and tumble sports massage but one of those coveted Swedish gigs that cost upwards of $150 at a fancy spa…
During breakout sessions at a patient symposium, a massage therapist offered her services to our group, hoping to bestow a haven of relaxation. She was utterly baffled by the dearth of volunteers for a free massage until I explained how our muscles react to stimulation. After all, I port a history of educating massage therapists about the Mexican jumping beans in my legs at the touch of their fingertips.
Aaaah, we achieved clarity. Perhaps she could work on locations that relieve sinus congestion, avoiding contact with my upstarts. Didn’t do much for my aching muscles but I went home breathing easy!
Posted in Life
Tagged Chronic illness, Chronic pain, Dystonia, Health, Massage therapy, Movement disorder, Muscle, Muscle contraction, Neurological disorder, Relaxation, Spa, Swedish massage
Did I say that? Certainly not, Ms. Dystonia Muse is no Ebenezer Scrooge!
The Holiday Season is the perfect time to reflect on all the year has brought for which we can express gratitude. Yes, our health may pose a constant struggle but we must believe in those flip sides. The friends and family who make us smile and support us constitute treasures beyond compare. As for my New Year’s Resolution, I shall leave behind 2013 – the good, the bad and the ugly! – and take heart in 2014. New year, new opportunities, new hope.
I’ve shared so much of my life with Dystonia on this blog and so many have graced me by reading. I urge readers to give me the gift of your details – all health conditions welcome! Chronicles Of A Dystonia Muse embraces everyone who contends with medical issues or feelings of “difference.” I’m proud to showcase Dystonia BloggerMania on my sidebar – fellow troopers blogging their real life stories week in and week out…all set for a visit!
Wishing you peace, love and joy in 2014! May you experience the miracles residing within your heart and share them with the world.
Posted in Musings
Tagged Blogger, Christmas, Conditions and Diseases, Dystonia, Health, Holiday, Holiday Season, Movement disorder, Neurological disorder, New Year, New Year's resolution
Menstrual cramps, stomach cramps, leg cramps, we’ve all had them in one form or another. Take an Advil and if they persist, call the doctor in the morning…
If you’re otherwise free from movement disorder, those cramps are about as close as you’ll get to a dystonic movement – you’re experiencing nothing less than an involuntary spasmodic muscle contraction, painful to boot. Surprise, Dystonia isn’t quite the unfamiliar territory you thought!
In a devilish merger, my foot cramps are a case of ordinary cramp meets DYSTONIC FURY. I may observe a lift of toe or turn of arch but the real craziness is the frenzy I can’t see, daring me to halt this out-of-control party. Fortunately, I’m not without experience handling these matters, tending to strike without warning. Pressure is required to quiet my visible movements and initiate a dig into the hidden turmoil…
Springing from my bed, I channel my inner bunny and hop like mad in a resolute attempt to pound the insanity out of my muscles. Often, we go several rounds before the knock out punch is delivered but I’m ever grateful for my victory!
Posted in Life
Tagged Chronic pain, Cramp, Dystonia, Health, Humor, Movement disorder, Muscle, Muscle contraction, Neurological disorder, Positive thinking, Rabbits
Man has long pondered the question, “Are we alone?” Surely, in the immeasurable depths of the Universe, full of untold galaxies, there must be some planet that supports human life forms…
My thoughts about Dystonia followed a similar path. I couldn’t help but wonder if there was anyone out there like me, even if they inhabited a distant continent. Yes, I’ve met plenty of people with Dystonia but we all walk to the beat of our own drum – or neurotransmitter misfirings. Indeed, it’s easy to view the various types of Dystonia as different disorders. Even my compatriots with generalized Dystonia paint radically different pictures and respond disparately to treatment. Some lead lives I can’t fathom. Others express surprise I belong within the fold, making me feel guilty for all those years of frustration.
On the cusp of my 48th birthday, I stumbled upon “Run Carrie Run,” a blog written by a woman who embraced long distance running as her cause after DBS surgery straightened her stride. Curious about her “before” status, I encountered a veritable shocker, a stroll I knew intimately but only viewed in brief glimpses…in a mirror or store window.
There are simply no words to describe my reaction to my walking twin. Though separated by her successful surgical procedure, the sight of another human being with my manner of gait delivered a kick to my soul. I breathe the feel of that motion, how the foot gets snagged in the air, the bumps along the way. What an immeasurable relief to find another human being who once walked in my oddly navigated shoes.
Carrie’s surgical victory makes me wonder what’s available for me. While I’m no aspiring marathon runner, wouldn’t it be interesting to strap on the New Balance and execute a smooth 5k. Hey, I’d settle for a fluid walk to Fairway!
I encourage you to learn Carrie’s story at Run Carrie Run! While I stand in awe of her physical feats, Carrie’s greatest achievement is how she transformed adversity into a renewed sense of purpose. Carrie may have bid farewell to long distance running with a final half-marathon on Nov. 3, but I’ve no doubt she’ll create yet another new beginning in pursuit of passions she finds possible…
“My lasting message would be don’t ever give up, don’t fight the dystonia, accept it as your super power – your power to be different and be able to do different things that other able bodied people can’t.” Carrie Siu Butt
Posted in Inspiration
Tagged Carrie Run, DBS, Dystonia, Health, Hope, Long-distance running, Marathon, Movement disorder, Neurological disorder, New Balance, Super power
Computers, tablets and smartphones are turning handwriting into a lost art. About time, movement disorder raided my “lost art” years ago. While feather quills and inkwells summon a whimsy that appeals to my sense of romance, the coldly technical word processing program eases my burden from fingers to shoulder. After all, with Dystonia even a Post It requires an abundance of effort!
My exercise of graphomotor skills involves my own unique rendition of motor planning: firmly anchoring the writing instrument in my hand, controlling my motions with a stiffly held arm (try writing when your arm’s a tension headache), favoring slow staccato print utilizing a pencil to reduce the chance of a runaway letter. The overriding theme: control, control, control, which is precisely what my handwriting reveals about my personality! Truth be told, graphologists prefer to base their analysis on cursive writing, garnering scant attention over the years and uniquely unqualified to make a searing statement about me.
In my case, the compositional elements that go into lettering – slant, size, loops, smoothness of line – are capriciously determined by the whim of renegade muscles and a confused left hand that’s hardly my first choice of athletes. To this day, I possess an utter lack of knowledge of the proper tilt of paper for my oddly scrawled script. Indeed, this “enforced lefty” finds herself challenged distinguishing right from left absent the instinctive guidance supplied by undisputed “handedness.”
I carry fond memories of my childhood knight in shining armor: a sleek Smith Corona electric typewriter I lugged to school for essay exams and relied on to recopy class notes and pound out homework. I speak of an era before White Out transformed editing, when color typewriter ink cartridges ranked cutting-edge and the apple was merely a fruit.
This summer I neglected the beach and barely left town – aside from a trip to South Florida to visit my father – so I determined to take a vacation from my Dystonia…if only my muscles agreed to cooperate. How does one get away from the gift that never stops giving? Considering the impact of the heat on my swagger, I found myself in search of a modus operandi for my reprieve. Perhaps all I needed was to abstain from my compulsion to take a weekly swipe at the vagrancies of movement disorder. I wished my blog an abundant first anniversary and followed suite by hunkering down for a mid-summer nap.
I found considerable relief embarking on a vacation from a single aspect of myself, perhaps a metaphor for all I long to leave behind. Though Dystonia stubbornly insisted on continuing its dominion over my movements, I happily report the small space it occupied in my daily focus. Now that’s a trip I should make more often. Though we can’t pick and choose the assorted parts comprising our wholes, we can certainly choose where we allow our thoughts to wander.
So let me remind you, as I’ve reminded myself, that life is about so much more than Dystonia…or any medical condition. We all have room in our minds for those much-needed respites from our constant – and unwelcome – companions.
Individuals who encounter health issues later in life tend to reference “before” and “after,” a distinct turning point that irrevocably rocked their world. I can’t remember time before Dystonia. All my experiences have been informed by this condition. I’d welcome the opportunity to meet myself absent Dystonia, me minus the obsessive need to assert control in compensation for uncivilized muscles that refuse to be tamed. I don’t carry a mental list of activities I “miss,” just ones I imagine and my own unique take on the everyday.
One girl told me how much she missed skiing. Based on my singular experience, can’t say I’m sacrificing much. My foot, none to partial to enforced confinement, had its own opinion about staying in that boot. I found the view from the lift engaging until my brother slathered me with tales of fallen horror. Reaching the bottom waxed problematic but I swiftly mastered the art of falling and Dystonia helped my skis form an inverted “V” to slow the pace. Didn’t bother with a second run, the hot chocolate bar held more appeal. I’ll say this, I looked rather svelte in my snowsuit and things weren’t all bad considering the miracle of getting my feet into those boots and myself down the slope.
The sport of movement disorder is an alternate reality of the same world. We’re swept along on a moving sidewalk that doesn’t stop, tiny little “events” filling our days. Whatever the age of onset, I surmise the physical ease of a prior existence becomes blurry for anyone as the years pass, like an inability to remember life before becoming a parent or falling in love. I walked and wrote correctly for my first 8-1/2 years and spoke “more acceptably” for my first 20. These memories entirely evade me.
Chasing lost yesterdays is no way to build our todays. We must strive for the happiness that’s within our grasp and understand that no human being exists without limits. I find tremendous beauty in the hope, optimism, and insight of those who walk the cracks in the pavement and compose their lives into unique poems.
Blue. The reflection of light between violet and green on the visible spectrum, an emotion that bespeaks sadness, a tart round berry, the color of sea and sky – also a tactic for raising Dystonia awareness. We’re in the midst of Dystonia Awareness Week (June 2-8) and the “Go Blue” movement is coloring locks of hair, influencing shades of dress, painting sultry eyelids, and burgeoning blue awareness ribbons and bracelets to get the world chattering about Dystonia.
Blue abounds in a variety of hues: azure, cobalt, cornflower, cyan, indigo, midnight, navy, periwinkle, powder, royal, sapphire, teal, turquoise…and let’s not forget those baby blues. Choose your shade and conduct your own Dystonia 101 class! Be creative, perhaps you’re inclined to sing the blues or fly with the bluebird. As you can see, my blog’s “gone blue” for Dystonia!
Posted in Inspiration
Tagged Awareness, Awareness bracelets, Awareness ribbons, Blue, Bluebird, Conditions and Diseases, Dystonia, Dystonia Awareness Week, Health, June, Movement disorder, Neurological disorder
One of my favorite children’s books is The Little Engine That Could. Now there’s a struggle that speaks to me. Sparkling blue, the little engine just wanted to surmount that hill embracing the power of positive thinking. While the story teaches the value of optimism and hard work, to me it’s all about the power of trying. The engine wouldn’t have made it anywhere if he didn’t determine to tackle that daunting hill.
You see, The Little Engine That Could started out as The Little Engine That Tried. “I think I can” goes to the heart of the trier. Although we don’t always beat the odds, we persevere in the face of them. Triers may not ascend the victory stand but always earn the “E” for effort. We never disdain second place or honorable mention, instead focusing on whom to thank for getting us there. Indeed, triers remember to enjoy the scenery along the way in case we miss our intended destination. Triers needn’t worry about leaving a trail of regrets lying in the dust.
Though Dystonia follows me more closely than my shadow, I’m ever the trier with my stumbles and falls. Often, it seems my life is more about trying than achieving, living without remorse my greater goal. Circumstance frequently requires us to take a deep breath and attack those towering hills. The beauty of the good old-fashioned try is how we accumulate strength from persistency of effort and find no failure in lack of success.
When in doubt, just give it a try…
Posted in Inspiration
Tagged Children's books, Dystonia, Hard work, Health, Little Engine That Could, Movement disorder, Obstacle, Optimism, Positive thinking, Train, Trier, Watty Piper
For most of my life, I’ve been “dis” at ease with my Dystonia, so if the shoe fits…
There are a number of nasty words in the English language but perhaps none worse than “dis*ease,” “dis*ability” and “handicap.” They make us feel less than whole human beings and fling us outside some perceived realm of “normalcy,” promoting discomfort with what I call lack of perfection. They beg the questions: Is there something wrong with ME? I move, therefore I am? I spent years chasing idealized images until stopping short at the conclusion my flawed realities will have to do perfectly fine. Besides, I prefer to see life as a philosophical and psychological journey rather than a crooked walk down the street.
We all share in creating dis*ease unease: personal discomfort with outward signs of weakness, inquisitive (I didn’t say mean-spirited) stares turning humans into objects, well-intentioned questions, unsolicited assistance invading silently staked personal dignity. No one wants to envision taking on the physical and emotional struggles of illness but for many, ill-health is transacted as an inescapable aspect of the business of life.
When dis*ease turns on a dime, remarkable is the proliferation of the healthy, blissfully unaware of their fragile status. People fail to appreciate the feats of nature in the properly functioning body until the control system goes awry, focusing on beauty bumps that mar the surface. We worship flawlessness, youth, good looks, virility, physical strength, aiming for the maddeningly elusive perfect 10. When I confess my desire for someone’s easy lope, they laughingly note how I hardly covet their stride while I stand mystified. Perhaps they imagine a pigeon toe, wobbly knee, or less than shapely leg, rather insignificant compared with the navigational mischief practiced by my naughty neurotransmitters.
Our true beauty resides beneath the skin in how we open our hearts to life and share our souls with others. Dis*ease can distort the pretty picture that’s merely gift wrapping, requiring us to appropriate Superman’s x-ray vision and judge one another for the qualities we carry, catapulting dis*ease into ease.
Am I able to use the gym? The questions people ask! Heavens, I inhabit the same world as the rest of you…or do I?
Going to the gym is like careening through a rabbit hole into a surreal Wonderland full of disquieting adventures! While I watch fellow “athletes” deftly execute coups of gluteus, hamstring and trapezius on strange, weight-bearing apparatus, I largely refrain from partaking in their revelry, instead creating my own zany tea party.
For starters, any unstable surface challenges this house of cards, causing my muscles to go haywire and summoning my core to control the show. My Mad Hatter is a device I call the “marshmallow” – flat on one side, rounded rubber cushion on the other (exercise mavens know this as the Bosu ball). My feat? I “stand” on the rounded surface and wave my arms in the air to further mess with my balance. Give that device a go during an earthquake and you’ll see my task isn’t quite so easy as it looks.
My personal triathlon involves a deceptively simple maneuver – the one-legged squat – on stable ground. Try supporting your entire corpus on one leg and then bobbing up and down while engaging in bodily combat with movement disorder! My left leg insists on a quirky diagonal directional that precariously holds my weight as I teeter through the motion while somehow remaining upright. Three sets: that’s a workout!
For much of my life, the gym didn’t even appear as a blip on my radar. Courtesy of a handful of trainers who’ve done Lewis Carroll proud, I’ve crafted my own realm of possibilities. Rather than coveting unreasonable exploits beyond my reach, I rule over the territory I’ve conquered including a tamed Madame Bosu – now that deserves a spotlight on my résumé!
Every clan enjoys its special celebrations. In my extended family, April marks Parkinson’s Awareness Month and I’m offering up a treat in honor of the occasion.
During my college days, I was privileged to encounter a remarkable professor who became my mentor and transformed my Brown experience with his brilliant lectures, droll anecdotes and unwavering support for my dedication to his personal and professional passion, Russian History, a major we jointly fashioned. I’ll even confess an unrequited and short-lived “schoolgirl crush.” Charismatic and compelling, Abbott Gleason is someone who secures an impression!
In a bitter twist of irony, several years ago Professor Gleason, long-standing member of my Brown University family, joined my movement disorder family with onset of Parkinson’s. He breathed his journey to life in an evocative article, “Getting Around in Oz,” that served as inspiration for this blog, encouraging me to fling open the gates of my wild Dystonia ride. Abbott Gleason presented a vision of how to educate with humor and wit absent a trace of doctor-speak. In his wry introduction to his personal odyssey with Parkinson’s, you’ll glimpse the measure of this man. Onto the main attraction, truly worthy of a read: Getting Around in Oz.
I urge you to check out the Parkinson’s sites featured below and in my sidebar. If you find your way to NYC this month, don’t miss the Parkinson’s Unity Walk in Central Park on April 27, 2013, an impressive statement of solidarity by the Parkinson’s community.
As April unfolds, I’m sending a shout out to everyone who battles Parkinson’s and hope you’ll do the same. We need link arms in friendship to extend the spirit of the Unity Walk. No one person, no single medical condition, stands alone. Team Dystonia declares Let’s Beat Parkinson’s!
Meet Some Parkinson’s Bloggers:
OK, perhaps a bit of backtracking is in order. When I was in 5th Grade, a group of ignorant boys mimicked my walking in a school hallway, changing this young girl’s life. From that moment, I began to embrace an irrational belief that my Dystonia was somehow distasteful to the opposite sex, reinforced over time by a paucity of male friends, dates and boyfriends. Naturally, I blamed Dystonia, the obvious scapegoat for anything that pushed my life outside the “normalcy” I craved.
Fortunately, my seemingly reasonable but foolish presumptions were counterbalanced by an imaginary prince who whisked me away from Scarsdale on his white horse – or via white Corvette. In the plot line of this fairy tale, my gallant chivalrously brushed aside my health issues upon gazing into my eyes, a delightful fantasy that failed to procure me a social life.
Notwithstanding a medical lifetime sentence imposed at age 8-1/2, a troop of real world princes busted me out of my childhood prison, demonstrating that eating Quiche and sensitivity to Dystonia are a real man’s prerogatives. Now I take heart in guys who treasure books for the reading and understand a wealth of imperfections keeps life interesting.
I leant a heavy hand constructing the walls that held me captive. No matter our objective circumstance, we imprison ourselves in the subjective images we embrace. The key to living with – or without – disability is to espouse a “healthy” self-view and carry faith in life’s possibilities. I ever take heart my Cinderella ending lingers within arm’s reach.
I don’t buy printer ink without carefully investigating my options. You can only imagine how I approach a decision like bilateral brain surgery. Not a grain of sand is left unturned in my lab of microscopic dissection. Popping a new pill is one matter. A potential starring role in a two act surgical drama involving a drill, a brilliant neurosurgeon and two electrodes about to take a slip into my brain for an ongoing adventure of electrical proportion is quite another story!
In a process that even the medical community doesn’t fully understand, the electrodes – suspended in the brain – send out a “help is on the way” signal that somehow overrides or interrupts the mixed-up messages confusing the muscles. Equally mysterious, speech generally receives no benefit, a giant “X” on my list of pros and cons. Each electrode attaches, via surgically implanted wires, to a battery-powered stimulator lurking in the chest and controlling the pulses emitted. Completing this pretty picture is a handy remote that turns you on and off, changes the channel and controls the volume like you’re a TV set. Obtaining programming nirvana can take months, even a year.
The upside to all this nerve-racking hoopla – in a nutshell, Deep Brain Stimulation – is the “am I dreaming” possibility of gliding into my fifth decade after forty years of laborious gait…but no promises. Only requires a ticket to a live show (yes, I’m awake) where I receive a feature role. They even throw in a cutting edge haircut dispensing with the need for shampoo. Would certainly beat a surprise party for impact but this Dystonia damsel hasn’t reached her surgical breaking point. Perhaps if my walking pursues a downward slope from reducing my dalliance with Mr. Art, I’ll undergo a change of heart.
Post Script: DBS is a story with more flip sides than a stack of flapjacks. This procedure can change lives, uplifting individuals from wheelchairs to stilettos, merciless spasms to merciful serenity, plodding gait to measured marathons. Check out my friend, Pat Brogan’s blog, Battery Powered Person, for a glimpse into the transformative potential of DBS.