Heralding the Dystonia Medical Research Foundation’s 4th Annual Bronx Zoo Walk, I couldn’t be more hopeful of all the future holds for our community of Dystonia patients, mothers, fathers, sisters, brothers and friends…sharing challenges, life struggles and hard-fought victories.
With Dystonia Zoo Walks burgeoning across the country – 13 in 2018 – awareness is on the rise as we celebrate the promise of tomorrow. Fundraising is how we push that promise to fulfillment. Each of us bears the potential to activate our friends, families and colleagues to cure Dystonia. Start with determination, add in a good measure of persistence, and a dash of keeping expectations at bay. Strength in numbers means we’re not asking for the moon. Remember, our fundraising efforts sow the seeds of hope.
Gather at the Bronx Zoo on Sunday, September 16 for a memorable day of Dystonia awareness, fun and FUNdraising. Enjoy refreshments and festivities and then roam the zoo at your leisure. Proceeds benefit the Dystonia Medical Research Foundation. With collective activism, we can cure dystonia.
REGISTER ONLINE: Bronx Zoo Walk Registration
If you can’t attend, you can sponsor me using this link: Pamela’s Zoo Walk Page
EVENT DETAILS:
- $25 for adults and $15 for kids including refreshments, family-friendly activities, event raffle, t-shirts, and all-day admission to the Bronx Zoo.
- Registration opens at 8:30am. Event begins at 9:00am.
- Your’re encouraged to start a team and fundraise. Your team name will be printed on team t-shirts as long as at least 10 people register for your team by Sept. 3.
- Our Zoo Walk Challenge is back. New and incremental donations over last year will be matched dollar-for-dollar by an anonymous donor.
Recently, I blew up my Universe – shopping for shoes. Formerly a forbidden pleasure, I literally soared to new heights trying on all sorts of heels. Though I must confess, I don’t know how my fellow females bear the discomfort of those pointy toes and stilettos that send me teetering and tottering.
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.
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.
Post DBS, my life has been revolutionized by a startling revelation: Traveling from Point A to Point B is as “effortless” as moving from one foot to the other! I exist in a surreality I never could have imagined. Who would have thought I’d ever be in a position to compare and contrast smooth and twisted gait! Conquering distance has become user-friendly. Has NYC shrunk? This on-the-go rookie well knows the act of walking straight is deceptively simple – even miraculous – and with profound effect. Now that all my ducks are lining up in a row, I attach new meaning to the words “independently mobile.”
In 2012, I shared my deepest, darkest phobias about my speech in a post titled “
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.
Last month, I aced my starring role during neurosurgery. Now that my neurostimulators have been powered on, I find myself in a constant state of heightened hyper-awareness of my movements making my body the “star” of every moment.
As I made my way to my first DBS programming session during the chaos marking morning rush hour, I was abruptly reintroduced to the inhumanity inhabiting my fair city. Hardly the picture of health, I stood braced against my walker, a colorful flowered scarf sculpting my recently shaven head, watching taxi after off-duty taxi unceremoniously sail by me – patently ignoring my hand wildly flailing through the air in an act of deliberate motion having nothing to do with my Dystonia. I couldn’t help but surmise that cab drivers hold no interest in attending to my walker. Where was Sir Galahad, galloping up Third Avenue to rescue me on his black and white checkered horse majestically draped in yellow?
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 been a blond, brunette and redhead. Now I sport a skinhead. At the altar of DBS, the sacrificial lamb is my hair. So how to make the best of my untenable situation when there’s no use crying over spilled milk? My go-to guy is my “secret weapon:” the handy PhD Dystonia forced me to earn in “Making Lemons Into Lemonade!”
