Sending out my warmest wishes this Holiday Season.
May 2016 be a year blessed with peace, joy and hope for all!
Sending out my warmest wishes this Holiday Season.
May 2016 be a year blessed with peace, joy and hope for all!
Thanksgiving offers us a chance to give thanks for the treasures we enjoy – our families, friends, callings, the bounties decorating our lives. Most appropriately, Thanksgiving is followed by Giving Tuesday, a day bestowing the opportunity to actively express our thanks for all we have by giving to the causes in need of our support.
For me, this Giving Tuesday is particularly poignant as I celebrate The Martin & Roberta Sloate Dystonia Research Fund and the hope it embodies as we look forward to a better tomorrow. I’m forever grateful for my parents’ wide-reaching contributions to the Dystonia community in a heartfelt effort to make my world a better place and catalyze critical support for all families impacted by Dystonia.
I invite everyone to join with me in sending out a message of hope today on the occasion of Giving Tuesday. You can donate to the fund established in my parents’ honor at the Dystonia Medical Research Foundation, a place they called home, using the following link: The Martin & Roberta Sloate Dystonia Research Fund.
I’ll confess, for most of my life, I didn’t view myself as “disabled,” reserving this term for those with even more extreme physical liabilities. Yes, I felt “different,” but it never occurred to me that Dystonia qualified me for membership in any kind of exclusive club.
In my confused reality, I viewed individuals with disabilities as mirrors of my own imperfections, reflecting a self-image I couldn’t bear. Now I simply see people whom I count among my closest friends for reasons that have everything to do with the spirit their hearts embrace. No saints or heroes, just soldiers on personal battlefronts waging reluctant but necessary combat. After all, life is lived in the trenches not on a pedestal.
My argument with the whole concept of disability is how it creates a notion of us vs. them. Those of us with chronic illness don’t conduct ourselves by majority rule or elect representatives to a special Disability Congress to proclaim declarations of common attitude and award badges of merit for supposed acts of heroism. We take our lives thought by thought, day by day.
Think you’re so far away? Challenges abound for all of us, what’s your struggle? You could even try it for a few minutes, an hour, a day. Blindfold yourself. Shake your arm every time you eat, drink, write, keystroke, or play an instrument. Spin around crazily, then swim and sway down the street. Attempt 24 hours in a wheelchair. Do you feel to be a “sore thumb” or is your entire attention focused on your tasks? How much of you feels “able” and how much “unable?” It’s not our physical differences that mark us with a scarlet “D” but how society finds the need to distinguish us by them. The only “sore thumbs” are those thusly viewed by the rest of the hand. How about examining the degree of perfection the other fingers can claim!
The lesson I try to embrace every day is that each of us is a composite of unique information, no one aspect so particularly remarkable that we stand out as any more “different” than the person sitting or standing next to us. When it comes to my personal data, Dystonia is a fact tucked into the details of my life that’s completely uninformative regarding my worth as a person. While Dystonia is a bit of a visual drama queen, why it should dictate a “one size fits all” label is beyond me…and unfortunate.
I’m just like everyone else. I carry hang-ups, sport frustrations, worry about inconsequential details, celebrate life, laugh, love, dream, and strive to hold inner peace. May you find yours as well.
Living with chronic illness, we must strive to celebrate the moments where we find ourselves and seek out occasions to celebrate. Zoo Walks are cross-crossing the country and I’m thrilled to welcome the inaugural Bronx Zoo Walk to the Big Apple on Sun., Oct. 4, 2015.
This event is so much more than a FUNdraiser – it’s a wellspring for our hope and fuels our unity of purpose. Conditions like Dystonia disempower us from exercising full bodily autonomy as we transact the business of our everyday lives. The Zoo Walks present an opportunity to transform ourselves into empowers working to secure a better tomorrow. We’re looking to take one ferocious bite out of Dystonia and cage that wild beast!
I invite everyone to join the tri-state Dystonia community for a day of awareness and hope at the Bronx Zoo on Oct. 4. Proceeds benefit the Dystonia Medical Research Foundation (DMRF). You can register using the following link: Bronx Zoo Walk Registration
Enjoy the zoo as part of Team Dystonia Muse by inputting “Dystonia Muse” as your team when registering. Note there’s no racing involved, just a leisurely day at the Bronx Zoo. If you’re unable to attend, you can join us in spirit by making a donation to Team Dystonia Muse here: Donate To Team Dystonia Muse
I must include a warm thank you to the partners helping to ensure that the Bronx Zoo Walk is a memorable day: Allergan, Amsterdam Ale House, Bella Face Painting, Ben Asen Photography, Caricatoonist, Chocolate Works, Church Publick, Feinstein Institute for Medical Research at North Shore-LIJ, Ipsen, Lucy’s Whey, Magnolia Bakery, Massage By Touch Evolution, Merz, Mount Sinai Beth Israel, Parlor Steakhouse, Sarabeth’s, Serafina, Superior Soundz Entertainment, Third Avenue Ale House, US WorldMeds, Whole Foods Market, William Greenberg Desserts.
Check out these upcoming DMRF Zoo Walks:
Cincinnati Zoo Walk, Sept. 12, 2015
Register here: Cincinnati Zoo Walk Registration
Cleveland Zoo Walk, Sept. 19, 2015
Register here: Cleveland Zoo Walk Registration
Binghamton Zoo Walk, Sept. 19, 2015
Register here: Binghamton Zoo Walk Registration
Pittsburgh Zoo Walk, Sept. 27, 2015
Register here: Pittsburgh Zoo Walk Registration
POST SCRIPT- Visit my Bronx Zoo Walk Photo Album on Facebook using the following link: Bronx Zoo Walk Album.
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.
All too often, there’s a sideshow to chronic illness: our treatment regimen! Let’s take my pills. They’re small, white (or yellow) and round. They “control” (I didn’t say “cure”) my Dystonia but wreck havoc with my body. My meds require me to walk a medical tightrope juggling multiple balls in the air, engaging in a precarious – but common – balancing act.
My neurologist and I make all sorts of adjustments. We go down on one culprit with particularly distasteful repercussions until my walking worsens. Then it’s time to regroup. We add meds to address side effects, which in turn make their own statements. Understand, I’m an impatient person who rarely acts incrementally. I embrace BIG CHANGE. Not with my pills. The process of going up and down, not to mention trying new meds, is E-X-C-R-U-C-I-A-T-I-N-G-L-Y S-L-O-W. But I appreciate the need to drive with caution and intermittently engage the brake.
The “games” never end. I had to discontinue a long-standing drug that caused my blood count to plummet dangerously. Another regular exerts undue influence on my blood labs, rendering them confounding to everyone except my neuro. Then there’s the trial and error of “new” treatments. During a clinical study, I became convinced a med was making my Dystonia worse and hightailed my way off that highway. I speak from experience when I say serious drugs merit serious vigilance.
I reap the benefits of a highly knowledgeable and careful neurologist. However, responsible health care doesn’t end with a trustworthy physician. As patients, we’re the ultimate arbiters of the substances we ingest and interjecting a healthy dose of caution is prudent. Do the research, investigate your options, read the fine print, ask probing questions, and trust your instincts when it comes to side effects – after all, you know your body best.
With World Health celebrated throughout spring and summer, the American Recall Center has embarked on a campaign to promote medication safety (check out their tips below). The American Recall Center website is an invaluable resource for prescription drug and medical device recall information and other healthcare topics advancing informed medical decisions.
A dashing speech therapist broke my heart. No, it wasn’t a torrid romance ending in tragedy but his sage words of advice: conversational speech is the last dam to break. Worse still, the coveted prize we were chasing was “communication” not “perfection.”
I’m a self-admitted practicing perfectionist. “Good enough” is never good enough when my life’s work is a perpetual pursuit of Eden. I aim to scale mountains and then chastise myself for the slightest blunder. So, surprise, surprise, I embarked on speech therapy with abundant determination to nail that bull’s-eye. In my estimation, I’d practice, practice, practice until my speech issued perfect, perfect perfect. While I might not scale tall buildings in a single bound, I’d surely conquer them with a rigorous daily regimen. Then reality hit. Those darn “Ks” and “Gs” continued to pose a battle, median “Ds” and “Ts” relentlessly evaded me…and shall we discuss my lip sounds? Further, if I reduced my life to working on my speech when would I actually use it? I needed to modify the recipe.
Most people coast through sentences blissfully unaware of the verbal gymnastics they perform with every word. The tongue effortlessly careens from venue to venue in fluid motion while the lips execute deceptively simple maneuvers. The veritable clockwork programmed by our brains and slickly engineered by our orofacial muscles enables us to focus on the dynamics of conversation rather than the specifics of location. As if on autopilot, we register our speed, then sit back and relax as the flight conveniently navigates itself.
Until I began speech therapy, I pounded out my speech in appalled ignorance of the mechanisms of my physiological inefficiencies. I’d no idea of the muscular precision required to orchestrate individual sounds and master conversational flow. Further, little did I know co-articulation demands we pronounce our sounds in units – in other words, our forward-thinking brains work a step ahead of us – granting undue influence to the banes of my existence. Certain sounds manageable in isolation “malform” when coupled with anticipated sounds looming in my future.
Focusing on my wealth of articulatory challenges simultaneously – a feat of multi-tasking – poses overwhelming, particularly if I seek to partake in productive listening. Adjusting my lofty aspirations, I slow the party down and divert due attention to the dynamics of the discussion. After all, the turtle bested the hare with a slow and steady pace.
What are your fiercest multi-tasks?
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.
We all need role models who fuel our desire to make the world a better place. Mine is my dad, who’s passing this week has left a huge gap in my immediate family and also in my extended family: the Dystonia community.
Back in the 1970s, when my strange movements began, Dystonia posed a mystery scarcely understood by medical professionals. In the absence of specialized foundations, patients and their families had nowhere to turn. The movement disorder neurologist who diagnosed me could only offer utter lack of hope but that didn’t reside within my parents’ vocabulary and they determined to find a brighter tomorrow. If there was no way forward, it was time to construct a road.
With iron resolve and a heart full of love, my father scoured a barren landscape for information about my little-known disease. From his research at the local library, he located a rising neurologist – Dr. Stan Fahn – to help him forge the way, beginning with a much-needed medical conference opening a gateway to scientific discussion. My father’s fundraising gave birth to the first International Dystonia Symposium. It was a crucial step forward but the work had just begun.
Intent on his mission to secure me the very best care, my father helped build a thriving community that supports patients and their families while propelling forward medical advancements. The Dystonia Medical Research Foundation owes its strength to the steadfast determination of families like mine, the Belzbergs, the Kesslers and countless others.
Serving as the initial Treasurer, my dad worked tirelessly on behalf of the Dystonia Medical Research Foundation, earning a lifetime position on the Board. He never sought accolades, just a better life for me, in the process touching the lives of hundreds of thousands. He’s truly one of the unsung heroes of the Dystonia community and he’s my hero. My dystonia blog is a continuation of my dad’s vibrant spirit and can-do attitude. I’m eternally grateful for the life he made possible and the hopeful future he paved.
In loving memory of my father, Martin Sloate.
Donate to the Martin & Roberta Sloate Dystonia Research Fund here: Dystonia Research Fund.
I can’t think of a more distasteful task than listening to my answering machine message. There’s the shock of an alien voice even I strain to understand, followed by the dawning realization this is how I sound to friend and foe. Thankfully, this chore is only required when I tape a new message or forget my phone number and conduct reconnaissance in the form of a confirmatory call.
Recording my message is a disheartening comedy of errors. Accessing my inner thesaurus, I play out a maddening search for “perfect” words that don’t exist in a limited field of vocalization, discarding phrases faster that you can enunciate Jiminy Cricket…all the while stubbing my finger on the re-record button as I keep giving it “one more try.” By the time my word elimination game concludes, my message is reduced to the barest of bones and I can only hope callers will exercise their logical reasoning.
However, I staunchly refrain from resorting to a pre-recording, refusing to tender my surrender to the “luxury” of digitized speech!
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.
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
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
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…