At first I was afraid
I was petrified
Kept thinking I could never live
Without you by my side
But then I spent so many nights
Thinking how you did me wrong
And I grew strong
And I learned how to get along…
After a tumultuous 40 year relationship – plaguing me with a myriad of annoyances – I’m finding it challenging to cut the cord with my anticholinergic, even now that my brain bionics are waiting in the wings. Flexing its muscles, my anticholinergic is determined to stick around for Act II. However, I’m equally determined to boot him off the show.
Hardly known for my patience, I’ve exhibited unprecedented forbearance in the painstakingly slow process of Walking The Plank, even, shockingly, proactively taking a detour from the weekly weaning schedule when my walking grew funky. It’s all a delicate balancing act of amping up the power to compensate for lost “juice.”
With grad school awaiting me in the fall, I’d love to restore my short-term memory and normalize my urination so I’m not constantly rushing out of class for an impromptu rendezvous with the ladies room. The dream of being pill free shines strong, fortifying me with resolve to go the distance, no matter how long it takes. So Mr. Anticholinergic, as Gloria Gaynor sang so well:
Go on now go, walk out the door
Just turn around now
‘Cause you’re not welcome anymore
Weren’t you the one who tried to break me with goodbye?
Did you think I’d crumble?
Did you think I’d lay down and die?
Oh no not I, I will survive…
Posted in Health, Life
Tagged Anticholinergic, Artane, DBS, DBS Programming, DBS therapy, Dystonia, Gait, Medical device, Medication, Medtronic, Medtronic DBS Therapy, Movement disorder, Neurological disorder, Programming, Trihexyphenidyl
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
Posted in Inspiration
Tagged DBS, Dog, Dystonia, Fundraising, Independently mobile, Medtronic DBS Therapy, Miniature schnauzer, Motherhood, Movement disorder, Neurological disorder, Optimism, Pets, Positive thinking, Puppy, Puppy love
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)!
Posted in Life
Tagged Activa neurostimulator, DBS, DBS therapy, Deep brain stimulation, Dystonia, Gait, Hope, Independently mobile, Involuntary movement, Medtronic DBS Therapy, Mobility, Mount Sinai Beth Israel, Mount Sinai Hospital, Movement disorder, Neurological disorder, Neurosurgery, Optimism, Programming, Walking
Having been a “solo act” for a little over a week, I’m ready to – knock on wood – announce my new status! The occasion of our break-up was simple: in a miraculous burst of post-DBS reality, I came to the realization that my shiny blue walker had outlived his usefulness. At its genesis, our relationship stood a marriage of convenience. My inner stubborn mule protested his attentions – until it became abundantly clear my new friend offered benefits! The rock by my side, he protected me from a precarious loss of balance, carried my packages…and my puppy, and offered a spare seat on a desolate stretch of street.
Now that I’ve left my walker by the wayside, I find myself in a strange new reality. At times, I reach for him as I leave my apartment. After all, over the course of 2+ years, his constant companionship became a force of habit and, I’ll admit, a bit of a safety blanket. Life without him may be strange but it’s neither cold nor empty. Not quite used to navigating the local terrain without my hot wheels, I instinctively head towards ramped walkways when stairs have pleasantly become an option. Mind you, my gait still has its quirks and I entertain an unfounded concern that the full force of my involuntary movements will return.
Now that I’ve gone solo, there’s no turning back. Indeed, in a bizarre psychological conspiracy perpetuated by my feet, my brain and my “ex,” a dalliance with my walker actually makes my Dystonia worse!
Posted in Life
Tagged Activa neurostimulator, DBS, DBS therapy, Dystonia, Independently mobile, Involuntary movement, Medtronic DBS Therapy, Mobility, Movement disorder, Neurological disorder, Stairs, Walker, Walking aid
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.
This new chapter in my DBS saga began at my first programming session. I arrived determined to keep rising expectations at bay. Deftly manipulating her remote control unit, my savvy programmer began to work her magic. She turned the key in the ignition and took each “launch pad” on my electrodes for a test ride in search of signs of rough driving ahead.
Like my oral meds, neurostimulation can exert unwanted “side effects.” Now that all systems are go, I’m perpetually on the lookout for an inimical twist, twitch, jerk, grimace or spasm as I continually search for signs that the electric pulses in my brain are exerting some untoward effect. I struggle to recall the details of my involuntary motions pre-DBS for purposes of comparison but find this to be a futile task thanks to the ever-changing choreography of my Dystonia.
In the meantime, I’m officially electronically enabled. I stand before you a BATTERY emPOWERED FEMALE “humming” strong at 2.5 volts! With my handy remote, I can power myself on and off like a TV set. Plug me into an outlet, and I’ll light up the room!
Posted in Health
Tagged Activa neurostimulator, DBS, DBS therapy, Deep brain stimulation, Dystonia, Involuntary movement, Medtronic, Medtronic DBS Therapy, Mount Sinai Beth Israel, Mount Sinai Hospital, Movement disorder, Neurological disorder, Neurosurgery, Programming
Hollywood’s leading ladies have nothing on me and my starring role in a “surgical trilogy” featuring a brilliant neurosurgeon, his drill, cutting-edge guidance technology, and two electrodes taking a slip into my brain for an ongoing adventure of electrical proportion. Best supporting actor goes to the strong-armed “villain” in this medi-drama, the metal vise that fiercely immobilized me every step of the way. The hero, my Mount Sinai neurosurgeon, cool as a cucumber, assumed command over his troops in the OR. His team took no prisoners, bolting me to the operating table to set the stage for the drilling…but with my neurosurgeon controlling the scene, this dystonia damsel was hardly “in distress!” As for the “awake” part, our tete a tete during surgery was largely surreal as my “leading man” filled my field of vision during our big dramatic moment and I lacked a bird’s-eye view of the surgical scene. I’ve absolutely no recollection of the drilling.
Having considered – and rejected – DBS oh so long ago, I needed a pinch to jolt me into reality as we traipsed about the hospital – vise securely in place – on our way to a pre-op CT-scan. You’ll find my verdict – since overturned – on this site in the article “Promises, Promises.”
With DBS, the waiting is the hard part. Until that all-important first procedure set a bar on my expectations, my overactive imagination embarked on a joy ride over the prospect of two “awake” brain surgeries in the span of one month. For those Dystonia warriors considering DBS, rest assured that the “idea” of these procedures is far more daunting than their reality – especially that fearsome metal vise. After the numbing injections, it’s smooth sailing ahead. If you can handle life with dystonia, you’ve got DBS!
Once the surgeries are completed, this surgical thriller morphs into a tale of suspense. Stay tuned for my BIG MOVIE ENDING, dramatically revealed in 3 to 6 months…
My amazing Mount Sinai neurosurgeon is second to none!
Posted in Health, Life
Tagged Activa neurostimulator, Anxiety, DBS, DBS therapy, Deep brain stimulation, Dystonia, Involuntary movement, Medtronic, Medtronic DBS Therapy, Mount Sinai Hospital, Movement disorder, Neurological disorder, Neurosurgeon, Neurosurgery