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!
Posted in Inspiration
Tagged Activism, Chronic illness, Disability, Diversity, Dystonia, Equality, Health, Health activist, Inclusion, Involuntary movement, Movement disorder, Neurological disorder, Parkinson's, Parkinson's disease, Perspective, Positive thinking
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!”
Turning Lemons Into Lemonade never disappoints. I laud the virtues to be found in identifying positive outcomes for our negative situations without unduly minimizing our struggles. My friends may reassure me that it’s ONLY my hair – which will certainly grow back – but my solace hardly lies in downplaying the significance of our locks. After all, I’m a female with a telling history of life-defining dos. Rather, I find my comfort recognizing the importance of our hair by making a donation. With a few trips to Google, I’d surveyed the landscape and located a nonprofit, Children With Hair Loss, more than happy to claim my mane, chemical highlights and all.
For those about to part with their hair or seeking to lighten their load, check out the following organizations spreading sunshine with their good works:
Children With Hair Loss
Locks of Love
Pantene Beautiful Lengths
Posted in Health, Life
Tagged DBS, Deep brain stimulation, Dystonia, Essential Tremor, Hair, Hair donation, Movement disorder, Neurological disorder, Neurology, Neurosurgeon, Neurosurgery, Parkinson, Parkinson's, Parkinson's disease, Tremor
Here’s an attractive offer: Let’s shave off your hair, immobilize your head in a vise, drill a hole in your skull, insert an electrode into the right side of your brain, and wake you up for some fun in the sun before closing that hole. Then, invite you back to do it all again, left side this time – before implanting two battery-powered neurostimulators into your chest and snaking wires under your skin that enable us to activate those electrodes with electrical currents.
No, it’s not some twisted version of electric shock therapy but Deep Brain Stimulation (DBS) – perhaps not shocking your socks off but, hopefully, improving your neurological movement disorder, which is why you place that bet. Why not embark on a wild ride to slay the never-ending, hair-raising roller coaster commandeering life with dystonia?
Of course, your vanity interjects itself. After all, they’re shaving your head twice, replacing your lush – or not so lush – locks with a barren plain. As for the “awake” part, fancy chatting with your surgeon while he’s navigating an intruder into your brain. Then again, you find yourself trudging your way through your 30th college reunion, holding on to your walker for dear life as a once-familiar campus morphs into a forbidding obstacle course. Watch the impossible become plausible when mastering each step presents a triumph of will. Those looming procedures take on a whole new light, vanity and apprehension fading into luxuries you can ill afford.
All roads lead to Rome. Chin up, three surgeries, here I come!
Posted in Health, Life
Tagged DBS, Deep brain stimulation, Dystonia, Essential Tremor, Movement disorder, Neurological disorder, Neurology, Neurosurgeon, Neurosurgery, Parkinson's, Parkinson's disease, Tremor
Last week I experienced health care at its finest in my own peculiar version of one-stop shopping, heading to the hospital for a day of consultations flowing from Psychiatrist to Fellow to Attending Neurologist to Physical Therapist. Now that’s what I call patient-centered care, yours truly the star of the show! With Movement Disorder, one’s neurologist is often the tip of a medical ice-burg floating down a river teeming with doctors and therapists. Why shouldn’t treatment resemble a “power trip” to the mall to score a broad swath of retailers?
Pushing our “main squeeze” to the side, chronic illness ushers in a host of ancillary issues shaping quality of life. We confront side effects from our meds, the practical repercussions of a body gone wild, a seesaw of energy and fatigue…not to mention those emotional highs and lows. Assembling our go-to team requires us to work as our own Offensive Coordinator, searching out appropriate therapies – hopefully with providers who take our insurance – in an effort to quarterback a game plan aimed at gaining elusive yards as we journey up the field. The big “Hail Mary” may lie outside our control but we gun for those small victories.
Getting to the nitty-gritty of my “medical spree,” what a treat to bask in the rays of a professional crew evincing an understanding of a slew of complicated relationships – Dystonia the hub driving the wheel. They proffered care with concern, proactively addressed side effects rather than prescribing recklessly, and showed due respect for the knowledge I contribute…after all, I qualify as my own expert witness! Meanwhile, I enjoyed a bout of medical room service where the farthest I strayed was a jaunt down the hallway to display my decidedly Dystonic swagger. If only I could coax this symphony of place and time out of follow-up therapy appointments. When health care gets things right, it’s really rather incredible how much “simpler” our lives could be.
A great big thank you to the Bachmann-Strauss Dystonia Center of Excellence at Beth Israel, putting a capital “P” in Patient-Centered Care and addressing our multi-disciplinary needs!
For more information on Dystonia and Parkinson’s Centers of Excellence, check out the following links:
Posted in Health
Tagged Chronic illness, Dystonia, Health, Medication, Movement disorder, Neurological disorder, Neurological examination, Parkinson, Parkinson's disease, Tardive Dyskinesia, Tremor
Every 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:
I don’t buy printer ink without carefully investigating my options. You can only imagine how I approach a decision like bilateral brain surgery. Not a grain of sand is left unturned in my lab of microscopic dissection. Popping a new pill is one matter. A potential starring role in a two act surgical drama involving a drill, a brilliant neurosurgeon and two electrodes about to take a slip into my brain for an ongoing adventure of electrical proportion is quite another story!
In a process that even the medical community doesn’t fully understand, the electrodes – suspended in the brain – send out a “help is on the way” signal that somehow overrides or interrupts the mixed-up messages confusing the muscles. Equally mysterious, speech generally receives no benefit, a giant “X” on my list of pros and cons. Each electrode attaches, via surgically implanted wires, to a battery-powered stimulator lurking in the chest and controlling the pulses emitted. Completing this pretty picture is a handy remote that turns you on and off, changes the channel and controls the volume like you’re a TV set. Obtaining programming nirvana can take months, even a year.
The upside to all this nerve-racking hoopla – in a nutshell, Deep Brain Stimulation – is the “am I dreaming” possibility of gliding into my fifth decade after forty years of laborious gait…but no promises. Only requires a ticket to a live show (yes, I’m awake) where I receive a feature role. They even throw in a cutting edge haircut dispensing with the need for shampoo. Would certainly beat a surprise party for impact but this Dystonia damsel hasn’t reached her surgical breaking point. Perhaps if my walking pursues a downward slope from reducing my dalliance with Mr. Art, I’ll undergo a change of heart.
Post Script: DBS is a story with more flip sides than a stack of flapjacks. This procedure can change lives, uplifting individuals from wheelchairs to stilettos, merciless spasms to merciful serenity, plodding gait to measured marathons. Check out my friend, Pat Brogan’s blog, Battery Powered Person, for a glimpse into the transformative potential of DBS.