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!
Every Spring, individuals with Dystonia from throughout this vast country lend their enthusiasm, personal struggles and impassioned advocacy to advance mission critical policies aimed at eradicating Dystonia and improving patient care. The power of advocacy is nothing more – and nothing less – than the power of people banding together in pursuit of a common cause. The collective wealth of the experiences we recount illustrates the importance of the policies we promote. Our participation reminds those inhabiting halls of power in Washington that Dystonia is on the map…to stay…until we find the means to whip this debilitating condition.
On the flip side, we gain tremendous gratification from the knowledge we’re actively pursuing a cure, not merely awaiting one. One of the most difficult aspects of living with chronic illness is the degree of helplessness we exercise over the villain holding our bodies hostage. Participating in research studies, raising needed funds and advocating for important policies are direct and meaningful contributions that imbue us with a sense of purpose. Remember, no one chef bakes this cake. The search for a cure is a team effort reliant upon medical and research professionals, healthcare partners, patients, fundraisers, advocates, and all who support us. The accumulation of efforts we undertake propels us forward.
Those who can’t make Advocacy Day should take heart. Flocking to DC for a day of oral combat is by no means the only way to muster our numbers. The strength of our platform is fueled by the collective resonance of our individual appeals, assembled piece by piece. We needn’t travel great distances or endure a whirlwind of meetings jam-packed with issues. Advocacy can be as simple as a call or email to your local politicians introducing your health challenges and policy agenda. Time-sensitive “action alerts” requesting specific communications offer additional opportunities for participation “from a distance.” Sweeping displays of strength are composed of thousands of “tiny” efforts. We need every available voice raising our concerns as it’s impossible to know who or how many will tip the balance.
By no means are we building castles in the air. Health activism conducts serious business. Washington is steeped in special interests strong-arming policy and politicos jostling for position. Everyone with an interest in tangible outcomes bears responsibility for expressing an opinion about the actions – and inactions – of our government and reminding elected representatives why we entrusted them with their authority in the first place. Only by telling our stories and asserting our legislative programs can we be heard. Dystonia’s continued eligibility for DOD research funding is one potent example of the tangible outcomes our sojourns to Capitol Hill produce. I urge patents, friends and families to heed an imperative for action that yields concrete results. Armed with determination and an email program, you can even make a difference from the comfort of your home.
Dystonia Advocacy Day, April 9, 2014
Capitol Hill, Washington, D.C.
Dystonia Advocacy Network Legislative Agenda, FY15
- National Institutes of Health (NIH) appropriation of $32 billion to allow continued funding of important research programs.
- Active support for the Dystonia research portfolio at NIH including the Dystonia Coalition.
- Inclusion of Dystonia as a condition eligible for study in the Dept. of Defense (DOD) Peer-Reviewed Medical Research Program.
- Long-term solution to the Medicare Sustainable Growth Rate (SGR) formula that adequately reimburses physicians and ensures patient access to quality care.
The Dystonia Advocacy Network’s legislative agenda is found here: http://dystonia-advocacy.org/agenda/
Those with Parkinson’s can join forces with the Parkinson’s Action Network: http://www.parkinsonsaction.org
Posted in Musings
Tagged Advocacy, Capitol Hill, Congress, D.C., Dystonia, House of Representatives, Legislative policy, Medical research, Medicare, National Institutes of Health, Neurological disorder, NIH, Senate, Washington
Too often, I find myself apologetic over hurdles that come with Dystonia: I’m sorry it’s difficult to understand me…I can’t walk across the park…I need more time to finish this form. Worse are the silent apologies I make to myself. Why do I perpetually raise excuses for my condition as if responsibility for this annoying hoopla falls squarely on my shoulders? I possess greater control over my runaway temper than my speech or my stride. Dystonia arrived as an intruder on my doorstep, robbing me of some of my dearest possessions: clear speech, even gait, smooth handwriting, contraction-free enjoyment of life.
The perpetrators of this medical crime lurk deep inside my brain committing all kinds of chemical mischief. I’ve participated in a bunch of “line-ups” – ironically, I’m the one who’s scrutinized – but while a culprit surfaces in a blood test, the actus reus can’t be captured in a pretty picture and my “head shots” are dead-end streets. We know Mr. DYT1, my uninvited houseguest, orchestrates a mutant ninja protein – Torsin A – who’s ostensibly a key player in a conspiracy of neurological proportion involving a perplexing hoist of my brain with a modus operandi stumping even the most seasoned investigators. To complicate matters, a host of suspect genes orchestrating their own villainous behaviors are implicated in different forms of Dystonia.
On the bright side, I function as my own “neighborhood patrol,” doing my best to combat an ongoing bodily offense. I undertake every effort to keep the crime labs busy, proffering skin and blood samples, funky PET scans, functional MRIs…accompanied by eyewitness accounts of the damage inflicted on my landscape. Meanwhile, I remain a walking crime scene apologizing for acts I can’t explain. Perhaps my amends are best bestowed on the objects of my temper…
Posted in Health, Life
Tagged Conditions and Diseases, Dystonia, DYT1, Genetic disorder, Genetic mutation, Involuntary movement, Medical research, Movement disorder, Muscle contraction, Neurological disorder, Torsin A
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 the most annoying phenomena on our planet is the automated phone system. Everyone knows the technological turbulence inherent in speech recognition technology. Try navigating voice user interface with a speech issue, where the error rate increases with frustration. CLARITY?…puh-leeze!
Here’s the deal: speech recognition software operates on units called phonemes, the basic audibles of a spoken language…only I tug and gnaw at words that seamlessly flow off most tongues, concocting my own unique sounds that become hopelessly lost in mathematical modeling. Communication deteriorates into a comedic exercise of “stabs in the dark,” muse confounding machine. I never understand how my bank’s system confuses “Agent” with “Balance” though they do share the same number of syllables. To be honest, the person who programmed the system probably wouldn’t understand me let alone a computer-generated interface trying to reconcile its algorithms with my zany sound waves.
Pure speech recognition is the ultimate nightmare as I repeatedly press “0” in stubborn defiance of the lack of a human option. Worse, it deprives me of the opportunity to escalate the call to a “Supervisor” lounging in a remote call center. By this point, I require one seriously advanced piece of intelligence – artificial or real – to decipher my garbled rantings.
As for hands-free computing, my arms may desperately yearn for a rest but I envision Sir iMac erasing the hard drive when I command him to open Microsoft Word!