Sending you my warmest wishes for Peace, Love and Joy
this Holiday Season and a Happy and Healthy New Year!
Sending you my warmest wishes for Peace, Love and Joy
this Holiday Season and a Happy and Healthy New Year!
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.
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
Did 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!”
Yesterday 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!
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
Sending You and Your Family My Warmest Wishes for a Joyous Holiday Season and a Happy New Year!
Living 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.
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!
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.
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.
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.
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
All 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.
Take 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.