Category Archives: Inspiration

Lions, Tigers & Bears…Year 3!

9287823_s Fotor 1

As Dystonia Awareness Month approaches, I’m thrilled to fill in first place on my Dystonia Awareness Dance Card with the 3rd Annual Bronx Zoo Walk on September 10. This FUNdraising event has become my pride and joy, a day to celebrate awareness and make our way one step closer to realizing our dream of curing dystonia. We should all remember:

When a star is born, They possess a gift or two
One of them is this, They have the power to make a wish come true

When you wish upon a star, Makes no difference who you are
Anything your heart desires will come to you

If your heart is in your dream, No request is too extreme
When you wish upon a star, As dreamers do

The Bronx Zoo Walk is a day for Dystonia dreamers to come together at the spectacular Bronx Zoo to gaze upon the amazing wildlife roaming the lush greenery and dream about days to come when we are free as an uncaged beast from Dystonia.

THE VITALS

What:  Bronx Zoo Walk benefiting the Dystonia Medical Research Foundation.

When:  Sunday, September 10, 2017. Registration opens at 8:30am. Event officially begins at 9:30am.

Where:  Bronx Zoo, Great Hall, 2300 Southern Boulevard, Bronx, New York. Use the Southern Boulevard Gate to enter the Bronx Zoo.

Why:  Because we can make our dreams come true… Raise awareness of dystonia and funds for better treatments and a cure.  Another reason: Our Zoo Walk Challenge is back. Every new and incremental donation over last year is being matched dollar-for-dollar by an anonymous donor!

How:  Register, start a team, create your own fundraising page. Teams with at least 10 members by August 28 will receive team t-shirts. Register online using the following link:  www.dystoniafoundation.redpodium.com/bronx-zoo-walk

You can Sponsor Me using the following link:  www.grouprev.com/bronxzoowalk-pam-sloate

DYSTONIA MOVES ME CAMPAIGN

You can also dance your way into dystonia awareness by participating in the Dystonia Medical Research Foundation’s Dystonia Moves Me campaign, which runs throughout the month of September. Obtain materials using the following link:  www.dystonia-foundation.org//shop/product_detail/14088

2017 Bronx Zoo Flyer

 

Advertisements

Tap Dancing Class…or Priceless

IMG_0142 Fotor.jpgDid you ever think someone in a wheelchair could tap dance? Well think again. With special gloves sporting metal plates affixed to their palms and fingertips, the members of Mount Sinai Rehabilitation’s tap dancing class skillfully manipulated their hands from “heel to toe” along to a crooning Jerry Lee Lewis. I couldn’t help but tap my toes in time as I observed their display of skill and joyful tempo. Attired in tap shoes and a glittery “Gotta Dance” tee, Mary Six,  a former Rockette who lives with dystonia, taught us about brushing and cramp rolls as I languidly swayed to the enticing music. Then Mary Six waltzed around the room demonstrating with her feet the unique steps each participant should execute with their hands.

They say where there’s a will there’s a way. Everyone in this class has certainly found their way, giving me pause to reconsider what we really need to accomplish our goals. “Disabled” you say? Perhaps you need to review your dictionary, starting with the meaning of “ABLE!”

 

Disability Pride

80489597_s copy_FotorYesterday was my first occasion participating in New York City’s Disability Pride Parade and I couldn’t have been more proud and inspired by the very best New York City has to offer as I marched with Mount Sinai Rehabilitation. As our joyous celebration wound its way through the city streets on a hot Sunday – 5,000 richly diverse human beings strong – we forgot the pounding sun as we shouted our disabilities from the rooftops.

“Disability Pride” teems with an inherent irony: Take pride in a lack of ability? Yes, we announce ourselves with pride and incite inclusion. What is more empowering than accepting – and loving – ourselves, imperfections and all? We puff out our chests in celebration of how we persevere…and more…notwithstanding our disabilities and of all we overcome amid the daily muck muddying but by no means devaluing our lives. Whether we’re wheelchair bound, deficient in sight, gait, hearing or speech, struggling with learning or mental deficit, suffering from a disability that is “hidden” or glaringly evident, we take heart in our robustness of spirit as we bend and sway but never break in response to the challenges we face and conquer.

I am Pamela Sloate. I have Dystonia and I’m proud!

This slideshow requires JavaScript.

Dogs For Dystonia: My Ellie Bellie

ellie-bellie-fotor

 

 

 

 

 

 

 

 

 

 

 

As the Dystonia Medical Research Foundation honors our canine friends this February with their Dogs For Dystonia Virtual Walk, I’m moved to consider all my miniature schnauzer – Ellie – has meant in my life and the invaluable lessons she has taught me.

Bright-eyed and bubbly, loving, loyal and eternally optimistic, Ellie has infused my world with her exhilarating jubilance and unwavering affection. After an eon navigating life as a solo act, Ellie is a beacon of light brightening my days. She’s my steadfast companion virtually everywhere I go and I’ve connected with a cornucopia of maternal instincts that have long simmered beneath the surface yearning for expression. I wholeheartedly embrace my role as Ellie’s momma and find myself reveling in the joys of motherhood.

With the dramatic improvement in my gait post DBS, my energy level has risen closer to – though certainly not matching – Ellie’s and we’ve become partners in crime, exploring the neighborhood and local parks with vigor. Indeed, the changes Ellie has wrought in me are a huge reason why I reached for the brass ring and embarked on my DBS journey. Ellie is my most enthusiastic cheerleader of my newfound mobility and we celebrate our new life every day!

Ellie and I are thrilled to participate in Dogs For Dystonia to pay tribute to our faithful canine friends and the countless ways they enrich our worlds. We proudly join with the Dystonia Medical Research Foundation, fellow patients, friends, and their pets to celebrate our hope that one day we will indeed eradicate dystonia!

I encourage you to visit the Dogs For Dystonia website, where we’ve enlisted our “best friends” as fundraisers and share our heartfelt stories of how our pets have changed our lives:

Click here to visit the Dogs for Dystonia Website. Ellie invites you to join her by registering your dog: Dogs For Dystonia Virtual Walk

Ellie is committed to curing Dystonia! Click here to make a donation: Donate In Honor Of Ellie

Happy Holidays!

Sending You and Your Family My Warmest Wishes for a Joyous Holiday Season and a Happy New Year!

-Pamela-

 

Lions, Tigers and Bears, Year 2!

9287823_s editedLiving with a rare disease like Dystonia, I find myself self-conscripted into service as a fundraiser. It’s all rather simple: If I don’t invite people to care about my little-known disorder, who will? Curing Dystonia takes a village of patients, friends, and families…not to mention the medical investigators working diligently on our behalf!

I’ve also discovered that FUNdraising can indeed be FUN. Dystonia Zoo Walks empower us to advance our cause while checking out lions, tigers and bears, oh my!

For those who live in the New York City area, I hope to see you on September 18 for a memorable day of Dystonia fundraising and awareness at the Bronx Zoo. We offer a unique “twist” on traditional charity walks, as there’s no formal walking course. Jump-start your Sunday with family-friendly festivities – perhaps win a raffle prize – and then meander your way through the fabulous Bronx Zoo. Of course, you’re welcome on board Team Dystonia Muse! Can’t join in the fun? We’ve got you covered. Support us by making a donation.

Use the following link to register:  Bronx Zoo Walk Registration
You can sponsor me here:  Pamela Sloate’s Personal Page

From the bottom of my heart, I thank you for reading this blog and supporting my journey. With a team effort, we can eradicate Dystonia!

-Pamela-

2016 Bronx Zoo Walk Postcard Image

 

 

Season’s Greetings From Chronicles Of A Dystonia Muse

6001779_s_Fotor Holiday 2015

Sending out my warmest wishes this Holiday Season.

May 2016 be a year blessed with peace, joy and hope for all!

xxx

Pamela

Happy #GivingTuesday

45088058_s editedThanksgiving 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.

xxx

Pamela

Lions, Tigers & Bears, Oh My!

9287823_s editedLiving 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.

Team Dystonia Muse

Our White House Petition Is Making A Comeback!

24351216_s EditedThe Dystonia Community welcomes September wearing our hearts on our sleeves. Patients, advocates and the foundations that support us have banded together to advance a new petition requesting official White House recognition of Dystonia Awareness Month. The magic number is 100,000 signatures by Sept. 24 and we’re amassing them one by one!

I urge everyone to stand with us in what is truly a collective effort. It only takes a minute to sign – how about sharing with five friends? Anyone age 13 or older living anywhere in the world can participate. Those outside the U.S. simply leave the zip code blank. Remember, your signature isn’t complete until you click on the confirmation link the petition site will email you.

Make a difference by signing here:  White House Petition.

It wouldn’t be September without a “Flash Mob.” We’re celebrating Dystonia Awareness Month with a social media block party! Join in the fun using the following link:  Dystonia Awareness Month Flash Mob.

Happy Dystonia Awareness Month!

xxx

Pamela

A Hop, Skip & A Jump!

26418170_s Edited#JumpForDystonia is sweeping across cyberspace and I couldn’t be more excited. This inspirational awareness campaign launched by Dystonia Europe reminds us to live our lives joyfully and offers us hope that our seemingly elusive dream of freedom of movement is but a hop, skip and a jump away!

When was the last time you embraced a leap of faith? How often have you jumped for joy, jumped into the conversation, jumped to a conclusion…or jumped off that proverbial cliff? How about taking a flying leap and jumping for Dystonia?

There’s no better way to begin than a jump-start! Join our #JumpForDystonia Flash Mob this week (July 13-19) to ignite a wildfire of awareness across social media. Simply share a pic or video showcasing your best – or most creative – jump accompanied by the hashtag #JumpForDystonia. Pole vaults, long jumps, ski jumps and jump shots are all welcome. Enlist friends family and work colleagues. Let’s get the whole world jumping for Dystonia!

Check out our Flash Mob Event:  #JumpForDystonia Flash Mob

Enter the Photo Contest:  #JumpForDystonia Photo Contest

They say a picture is worth a thousand words. This #JumpForDystonia video is worth a million:

My Father, My Hero

9043868_sWe 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.

-Pam-

Donate to the Martin & Roberta Sloate Dystonia Research Fund here:  Dystonia Research Fund.

Make A Little Movement – II

19927674_sYou’re surely aware of Dystonia’s White House Petition – which is hanging around thru Oct. 9 – but I feel compelled to introduce a group of individuals who deserve a round of applause and laud a community that made more than a little movement to advance our cause.

Mike Delise is an advocate for patient Jason Dunn who’d carry the entire Dystonia community on his back if he could. Mike conceived the petition last Spring and refused to be deterred when it didn’t take off, planning a second effort for September. Mike has gone the extra mile for Dystonia, earning himself permanent membership in our family.

Then there’s Treacy Henry, a determined Dystonia patient who’s the juice behind dystoniaaware.org and the Make September Dystonia Awareness Month Facebook and Twitter communities. She’s devoted heart & soul to gaining White House recognition of Awareness Month and stands an amazing example of activism in action. Treacy’s daily communications have been the fuel keeping our community focused on our goal.

Kudos go to Angela Winnick for conceiving the recent Twitter Flash Mobs prompting us to head to Twitter to raise a united voice promoting #DystoniaAwareness. In less than a week, these Flash Mobs catapulted #DystoniaAwareness to trend #1 on Twitter, not bad for a rare and little known neurological disorder!

I couldn’t be more proud of our community…or more appreciative of the friends who’ve come forward to support us. I invite everyone to join tonight’s Flash Mob at 7pm ET. Visit our Facebook Event for a list of Tweets targeting news media and celebrities. Here’s one anyone can use: “Challenge you to a RT to support #DystoniaAwareness! www.dystoniaaware.org

xxx

Pamela

Dystonia Awareness: Wearing Our Hearts On Our Sleeves

photo-29If resolve alone sufficed to score White House recognition of Dystonia Awareness Month, the Dystonia petition circulating the World Wide Web would be a sure success. The petition drive showcases the determination of our community to educate our nation’s leaders and the public at large about our rare disorder – making life a little bit easier for all of us. Dystonia thrusts us into a constant physical battle with involuntary movements holding our bodies hostage. Awareness is that critical first step fueling our hope for a cure!

Getting down to the numbers, Dystonia is a small disease community in need of friends. Please join our movement to spread awareness by visiting the following link: White House Petition. Anyone age 13+ worldwide can sign. We have until Oct. 9 to collect 100,000 signatures. Contributing your signature and sharing with friends are small actions that go a long way towards putting Dystonia on the map.

Post Script: I invite everyone in the New York City area to head to Rockefeller Plaza the morning of Sept. 18 to participate in our Orange Splash at the Today Show dystonia awareness event.

And please, let’s not forget:
Balance Awareness Week from Sept. 15-21, 2014
International Ataxia Awareness Day on Sept. 25, 2014
National Prostate Cancer Awareness Month in September
National Breast Cancer Awareness Month in October
National Alzheimer’s Disease Awareness Month in November
American Diabetes Month in November
Lung Cancer Awareness Month in November
Rare Disease Day on Feb. 28, 2015
National Essential Tremor Awareness Month in March
National MS Education & Awareness Month in March
Parkinson’s Disease Awareness Month in April
Huntington’s Disease Awareness Month in May
Lupus Awareness Action Month in May

Team Dystonia: Get Ready To Rumble!

TeamD061013-ASeptember heralds the launch of Team Dystonia, a collective awareness effort spearheaded by a group of Dystonia organizations inviting us to paint the month a bright shade of orange.

Team Dystonia presents an opportunity for us to mobilize as a community. We’re fighting for nothing less than a healthier tomorrow…for ourselves and future generations. We stand as strong as our efforts and multiply our power when we work together towards common goals, generating a synergy that exceeds the sum total of our individual performances. I urge one and all to embrace collaborations like Team Dystonia and invite friends to join with us as we ignite the spirit of unity to broaden human understanding. We’re a small, unknown country in need of ambassadors. Promoting awareness accomplishes a critical step along the path to a cure.

Come September, let’s jump into the pool with a collective orange splash that ripples far and wide. Reach out to family, friends and strangers to spread the word about Dystonia. Simple deeds are as welcome as grand gestures. Check out the following awareness events planned for September:

White House Petition
Pump up the volume to help designate September Dystonia Awareness Month. Sept. 1 our online White House Petition goes live and we’ll have 30 days to gather 100,000 signatures. Individuals 13 years of age and older can participate and we’re taking signatures worldwide. Please join our Facebook Event and share on your social media to help us reach our magic number! Here’s a direct link to the petition: White House Petition.

Hashtag #TeamDystonia
Social media mavens, get cookin’ with the #TeamDystonia hashtag! Create your own concoctions that yield a whole lot of buzz! Doesn’t matter where you live, the Internet spans worldwide. Anyone can be an activist so make a little movement!

Splash Of Orange
Our theme color is orange, get those creative juices flowing! Catch the orange fire, lace your sneakers with orange sizzle, color your profile a bright orange hue, enjoy an orange-streaked sunset looking forward to the day the sun sets on Dystonia. The possibilities are as bright as a gleaming orange fireball.

Dystonia Moves Me
During September, the DMRF invites everyone affected by Dystonia to share their story with 30 people in 30 days. Contact awareness@dystonia-foundation.org to request a “Dystonia Moves Me” kit.

 

 

 

My Walking Twin

screen-shot-2013-11-04-at-8-58-17-pmMan 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

Getting On With Life

16542931_sAll too infrequently, we encounter unexpected inspiration. My online activities have led me to friendships with women who were once victims of abuse but presently stand as far from victims as one could possibly imagine. These female warriors, speaking their truths and lending their voices to those who face adversity, truly epitomize “Getting On With Life,” a concept I strive to embrace.

Getting On With Life speaks to so much more than putting our pasts – and hardships – behind us. It’s about moving beyond bitterness…even betrayal, recognizing those forks in the road where we’re given the opportunity to choose self-respect and taking the path of integrity. While I can’t begin to speak to the personal trauma experienced by those who’ve suffered physical or emotional abuse, I hold faith in the resilience of the human spirit, besieged but not broken. When pushed down, we need not lay on the ground amid the dirt. Empowerment is found in the determination to pick ourselves up and pursue our inner potential by “Getting On With Life.”

Remember, honor is only found in the causes we espouse when we abide by the principles for which we advocate. Even a life of impassioned activism stands empty if we fail to advance our own human decency.

 

Arash Bayatmakou: Determined To Assert His Independence

About Me ShotTake pause to consider the meaning you attach to “independence.” For our forefathers, it signified freedom from arbitrary, non-representative government. To me, it represents autonomy over my body and decisions….despite strident assertions of muscles resisting attempts at dominion. For Arash Bayatmakou, it means the ability to walk across a room, a simple freedom stolen from him by spinal cord injury. He finds himself in a state of rebellion against the lesser goal of “as independent as possible” repeatedly imposed by the medical establishment.

Prior to sustaining his injury, Arash was a vigorous athlete in peak condition who relished physical challenges and daring feats. One year ago, just three days after a 60 mile backpacking trip through the Sierras, his world turned upside down when he sustained a broken spine falling from a third story apartment balcony. His injury required seven hours of surgery involving incisions in the front and back of his neck and reconstruction of his upper spine.

Although warned by doctors to prepare for the very real possibility of never walking again, Arash entertains a fierce determination to heal his body notwithstanding paralysis from the chest down. Leaving no stone unturned, he’s embraced a grueling, multifaceted rehabilitation that’s included functional integrated therapy, intensive neuro-acupuncture therapy, and more traditional physical and occupational therapy.

As he painstakingly crawls up the fiercest mountain he’s ever climbed, Arash battles not only a battered body but also a heartless health care system that recklessly disregards the specific treatment needs of individual patients. Since he left the hospital, his health insurer has arbitrarily granted 6 weeks of 45-minute weekly physical therapy sessions when Arash is fighting for the comeback of his life. Though his requests for additional physical/occupational therapy or any kind of alternative therapy are repeatedly denied, Arash perseveres.

We rely on our aspirations to persist through frustration. The unresponsiveness of the health care establishment interferes with more than our medical care, it messes with our hope. Based on cost considerations, insurance companies have drastically reduced the allowable time for spinal cord rehab and an overriding efficiency has seeped from the rule makers and administrators into the attitudes of health care professionals, who tend to focus on functionality rather than full recovery. Hence “as independent as possible.” Arash’s hope derives, by necessity, from a wellspring deep inside himself.

Arash welcomes the slightest movement in his legs, even an involuntary twitch or spasm, shedding new light on mine. Every inch forward – or wiggle of toe – is a tremendous stepping stone on his path to recovery. My fervent wish is for Arash to stand victorious achieving his goal of independence. His personal fortitude and single-minded focus are beacons illuminating the way.

Accompany Arash on his journey at Arash Recovery.

Read about Arash’s struggles with his medical insurers in the Huffington Post. This is an eye-opening article by my friend, Gregory G. Allen.

Check out Arash “walking” for the first time since his accident in Ekso Bionics’ “Wearable Robot,” an incredible new technology promising to transform lives.

Make A Little Movement!

19927674_sThis past week, a group of men and women in a Facebook Group called Neuronauts – led by a dynamo named Lori Raines – determined to make a dent in the public consciousness via CNN iReports, the hope to spawn a bit of mainstream news. Indeed, injecting our “Dystonia Awareness” stories into a stream of iReports waiting to be discovered by other iReporters, iReaders and yes, CNN editors, secures its own victory.

Ostensibly, I joined this “Movement” to speak about my “movement.” Then I began to ponder the deeper meaning of our task. My first thought was how my story isn’t simply about me or even Dystonia. It’s about omnipresent realities that touch people everywhere: feeling different, struggling, embracing hope, promoting understanding, believing in an energy beyond ourselves. My greatest compliment is when people see glimmers of their stories in mine. Maybe it’s a physical experience, moment of humor or obstacle overcome. If my blog preaches anything, it’s how we’re all part of one encompassing narrative. Our individual plot lines enrich the world with variety. Our common thoughts and emotions keep us interconnected. My goal of explaining Dystonia is readily achievable by appealing to ideas that reside within all of us and the exercise of imagination. Our iReports stand as a collective effort to introduce our little-known cause and help you to learn just one part of who we are. For me, the goal is human empathy as much as publicity.

We all make movements and (hopefully) we also join Movements. The past year marked my introduction to the dynamic force of Health Activism. I’ve come to see that activists are nothing less than human beings realizing our potential to care about one another and the world we inhabit. Start by “activating” your mind. Direct your thoughts beyond yourself, engage in dialog with others, set forth to grow as a person and in the process you’re bound to inspire others. I started my blog out of a compulsion to share truths I’d stuffed deep inside for way too long. I activated my mind to think in new ways and planted seeds in my garden that flourished.

I invite you to make that all-important first step. Undertake an intention to advance a cause or truth you find significant. Perhaps it’s Dystonia. Maybe an entirely different enterprise “moves” you. Start a Movement, join a Movement but be sure to MOVE in a meaningful direction!

You can endorse our effort by selecting “This belongs on CNN” at the end of each article. Here’s my contribution: Pamela’s CNN iReport. This is a joint effort: Dystonia may be the engine but you’re the steam propelling us forward!

Kudos to Lori Raines, who conceived this event in the first place and encouraged us to get going!

Dystonia BloggerMania

11849272_sDystonia Awareness Week may have passed but make no mistake, the flame burns on. I’m proud to participate in Dystonia BloggerMania, the continuing celebration of Dystonia activism rocking the World Wide Web. Think of us bloggers as “reality journalists” – patients, parents and children determined to shake up cyberspace by flinging out our stories for all the world to learn. No scripts in this mass exercise of reality writing, just a flow of words coming straight from the heart.

Having spent the better part of a year revealing my deepest, darkest secrets, I undertake the utmost admiration for the raw honesty displayed by my blogging buddies as they share their innermost thoughts and personal struggles. While publishing our “diaries” can be a hairpin curve, we gain a tremendous sigh of relief from facing our demons and laying everything on the line. Take one step outside your comfort zone and the other foot will follow. Before you know it, you’re off on a brisk run.

Come join us. Blog for yourself, for your community, to enlighten the ignorant. Tackling the blogosphere is seizing a ripe moment to make a splash in the pool and practice your swimming strokes. Blogging entails publicizing a kaleidoscope of challenges constituting a difficult day in the hope of connecting with those in need of hearing us. We’re working through the most personal of issues in a public form of therapy as part of a never-ending journey to find invisible upsides amid the all too visible downsides of life. Blogging enables us to combat narrow-mindedness by offering up our intimate details as examples of the wealth of human diversity. We abandon great big chunks of our privacy for the greater good of educating friends and strangers about the insidious criminalities of our disorders. Our collective impact is realized post by post, read by read.

My Facebook group – Dystonia BloggerMania – welcomes Dystonia bloggers (and our fans). Truly, we’re sprouting all over the web. Visit our sites for a multiplicity of vantage points on life with Dystonia…and beyond. Don’t forget to leave your calling card – comments are the hot fudge topping on our ice cream sundaes!

Here’s our road map:
Shayla Anthony, Bekah the Ballerina
Tracy Blowers, Brand New Day 
Carrie Siu Butt, Run Carrie Run!
Desiree Castillo, Walking Forward
Matt Lawrence, it’s my life
Lisa Marie, Little Writings
Rebecca Moller, dystonia and me
Divanicio Pessoa, Homens De Bem