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
Sir Isaac Newton, take note, my Dystonia has served as a vivid example of your 3rd Law of Motion gone haywire: For every [voluntary] action there’s an equal and opposite [involuntary] reaction.
Now that the involuntary kinetic forces generated by my voluntary movements have begun to magically disappear, walking is no longer a contact sport. I feel as if I’ve fallen down a wormhole and emerged into a parallel universe where Newtonian mechanics have drastically simplified. My alternate reality gives me pause as I adjust to my newfound freedom. Who knew walking is as easy as putting one foot in front of the other and telling your legs where to go? Destinations that formerly loomed as remote don’t seem quite so far away.
When I trudged around the city with my walker, I measured distance by the corresponding depletion in my energy and operated on a permanent power outage. Every ounce of my being directed an overwhelmingly focus to the technical details of getting from Point A to Point B…with little thought for my destination – and scant attention to the scenery along the way. Post DBS, my energy quotas have completely transformed. I make my way around my neighborhood with power to spare enjoying the local landscape. Think of me as a bee buzzing along on full throttle as I relish the “conserved” energy I previously expended on the mechanics of walking.
I’m not the only one benefitting from my newfound energy. My puppy is thrilled to have a new training partner. Now she’ll have to learn to keep up with me (lol)!
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
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.
As 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!