Category Archives: Inspiration

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

Catch The Blue Wave!

18879161_sBlue. 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!

The Little Engine That Tried

4574134_sOne 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…

Reflections Of A Dystonia Advocate: The Power Of Unity

18210466_sAs I embark upon my second trip to Capitol Hill as a Dystonia Advocate, I reflect upon what this journey means to me and from whence we came. Of course, it’s an honor to speak for Dystonia and interject our issues into the legislative process but there’s even more beneath the surface. Dystonia Advocacy Day is an awesome display of the power of unity, which goes to the heart of our community and is precisely what we need to fuel our hope for a cure. Though Dystonia often feels like an amalgamation of different conditions, we stand strongest together. We share an imperative of unity of spirit, purpose and action.

Not so long ago, as recently as the early 1970s, there were no foundations fighting for us let alone a group of advocates advancing our cause in D.C. The organized cause of Dystonia is a story of the tenacity and determination of parents – including mine – who insisted on combatting a mysterious medical disorder and harboring hope for a better life for their children…also of patients who dared to dream of a world without Dystonia.

The Dystonia Medical Research Foundation (DMRF) tells a tale of how adversity connects strangers and extends families. When they founded DMRF in 1976, Samuel and Frances Belzberg planted seeds of promise in a destitute garden, carrying on their backs the hope of their daughter, Cheri, and Dystonia patients across North America. Banishing “surrender” from their vocabulary, the Belzbergs determined to slay the beast and support others facing the same foe.

This Vancouver family wasn’t alone. My parents stood tall when research was scarce and every foot forward measured a mile, including their part in the 1st International Dystonia Symposium in NY. I like to think fate brought my father to the Belzbergs but this is best attributed to his resolve to move mountains…or at least cross a continent! In 1981, Dennis and Barbara Kessler made their way to DMRF after their son, Arthur, was diagnosed, donating their hearts and souls. Families such as these – holding little in common beyond a rare movement condition – are bound by unity of spirit and purpose, coming together to light the path towards a brighter future.

Once the snowball gets rolling, it achieves its own momentum. In the early 1990s, Bonnie Strauss, a proactive Dystonia patient in New York, whose mother and grandmother were afflicted with Parkinson’s, teamed with her father, Louis Bachmann, and translated her aspirations into an annual golf tournament that burgeoned into the Bachmann-Strauss Dystonia & Parkinson Foundation. Bonnie enlisted family and friends to join her battle and once again the power of unity spoke loudly. Conviction, dedication, fortitude, perseverance – these are sacred words.

I feel honored to enjoy special bonds with both foundations: my father, the DMRF’s first Treasurer, played a key role propelling DMRF and Bachmann-Strauss is my “home away from home” in New York City. However, most vigorous is my connection with the Dystonia community, encompassing patients, families, caregivers, clinicians, and devoted organizations reflecting the diversity of Dystonia. Led and staffed by remarkable individuals, these organizations raise their voices and help man the front lines in a war that holds promise but has yet to be won. In a world riddled with selfishness, neglect, violence, even insane acts of terror, we all need friends and I’m grateful to everyone who works tirelessly to advance our hope.

I can’t help but marvel at the spirit of cooperation showcased during Advocacy Day, when individuals from throughout the country representing the full spectrum of Dystonia gather as one big family in pursuit of our common objectives. Join the fight – advocate, spread the word, share your story, volunteer, blog, fundraise – the particular action is less important than making that critical step to become involved. We need rise proud as a community, making a difference with a resounding symphony of concerted action. It’s my privilege to participate in the unity of Dystonia and our combined human potential to shape opinions and events. Take that leap of faith, never say “never” and never give up!

Check Out Some Community Friends:
Dystonia Medical Research Foundation

April Is All About Parkinson’s

14731123_s editedEvery 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:

Paddy Doyle: Living A Life Of Impassioned Activism

The Spirit Of Giving

14394117_sI can’t think of anyone who epitomizes the spirit of giving more than my soul sister, Marissa Christina. Marissa’s world is rocked by a vestibular disorder that jolts her surroundings, creating sensations of constant motion and messing with her balance. Imagine Marissa sails in a fragile ship amid stormy seas and she’s ever in need of staking a small piece of solid ground in respite from the turbulent waves.

2012 marked the year Marissa leapt outside of herself on a journey of discovery, embracing new friends whose lives have also been invaded by aliens of ill-health. The role she embraced was much more than storyteller. Part news reporter, part empathetic friend, part student, she immersed herself in bizarre realities that I’m sure in a sense felt oddly familiar, featuring them in her blog – – and social media with a series of monthly projects. When I seized the moment, Marissa welcomed me…and Dystonia as her December cause.

Educating myself on other medical conditions and focusing on another person’s journey may be the best way for me to pull through my own condition. -Marissa Christina-

Two self-confessed control freaks, Marissa and I bonded instantly. When we discussed our disorders, I couldn’t help but notice the reflective irony in our conditions. Mine manifests as a physical battle with my actual involuntary motion. Hers is an experience of sensory disorientation, although nothing is actually moving or the world is working at its normal pace. One day, Marissa’s perceptual environment developed “Dystonia” and she’s never been the same.

edited Marissa_bioI chalk up our encounter to fate and consider myself lucky to close out her 12-12-12 Project. I must give mention to the worthy souls with whom I share the spotlight and I urge you to learn their illuminating stories and read about their health conditions: Blake Watson, Kim M., Amy Gurowitz, Rhiann Johns, Sara Gorman, Dale Lehn, Peachy, Sarah Levis, Sarah Mills, and Andi Durkin.

Informing oneself about medical disorders is more than a cautionary tale; it’s how awareness is spread and an important step toward securing empathetic understanding among human beings. I hope you are blessed with inspiration in the coming year. Your company is my privilege!


Note: You can find Marissa on Twitter at

Gohei Nishikawa…Soul Friend

I recently enjoyed the pleasure of a private recital by Gohei Nishikawa hosted by the Bachmann-Strauss Dystonia & Parkinson Foundation. I didn’t know what to expect from a pianist who shares my condition. Certainly not a transcendent performance by a charming man with a boyish grin and endearing humor whose words waxed as eloquently as his notes.

A latecomer to piano at age 15, Gohei dove into an arduous relationship demanding personal sacrifice to fast track a burgeoning career. He embarked on a journey that brought him from Japan to New York City and landed him debuts at Lincoln Center and Carnegie Hall, only to encounter a mysterious disorder when he had just begun to fulfill his promise. Hands trained to intricately caress the keyboard suddenly froze when he sat down to play.

Gohei battles what is termed Musician’s Dystonia, an impertinent guest that acts out with a curl of the fingers when he exercises his craft and tends to behave when his hands aren’t engaged. Though his dream was brutally sidetracked, Gohei fought back to reclaim his miracle, presently an even harder-working right hand collaborating with two fingers on the left. Gohei determined to celebrate his passion through performance and teaching, devoting himself to refining the next generation of talent.

His artistry is light years away from a disorder that incapacitates and restricts. Gohei undulates his wings and carries his audience to another realm. His fingers brush whispers of encouragement, strains of hopefulness and declarations of strength. While his technical rigor is remarkable, what truly elevates his music is an emotional splendor that fits an entire universe into the magical vibrations emanating from the keyboard.

One of the cruelties of Dystonia and so many other disorders is their strike at the heart of life’s passions: the dancer losing the grace of her limbs, the athlete facing permanent dysfunction, the mother unable to lift her child, the musician whose hands turn rebellious. Triumph lies in adapting our dreams to fit our realities and stretching our realities to accommodate new dreams.

Gohei and Pam at Gracie Mansion.

I’m blessed with a succession of stories by people who navigate a life of physical struggle from a place of hope. Listening to Gohei’s awe-inspiring gift, I envisioned his journey and saw mine more clearly. His exultant return to piano is a taste of the celebration of optimism I’ve encountered. My new friends have touched my soul with their generous spirit and heartfelt candor.

Gohei is accepting students in Manhattan and Greenwich, CT. He can be contacted on Facebook: