With my battery change behind me – a bit of unnecessary “excitement” amid the chaos of COVID19 – this cyborg is now powered by “rechargeable” batteries with a shelf life of up to 15 years. Yes! The much-welcome reprieve until my next battery change surgery is counterbalanced by the daunting reality of weekly charging sessions.
My bedroom has been transformed into a “recharging studio.” Each neurostimulator has its own charging equipment pack that hardly harmonizes with my country decor. Sitting on my nightstand are two black “antenna” devices that look like flattened hockey pucks connected to two “Patient Programmer” remote control units attached to power cables inelegantly draped across the floor.
The recharging process itself is rather cumbersome. To make a love connection,” the antenna device must be placed precisely and securely over the neurostimulator in my chest. I slip into the harness supplied by Medtronic, secure the straps across my chest and around my waist, then drop the antenna into the handy pocket on the harness and look, hopefully, for the suggested eight blackened bars on the patient programmer screen indicating the recharger is fully communicating with my neurostimulator. Absent these bars, I must reposition the antenna by fiddling with the straps.
Time to turn on the TV, find a nice long movie, sit back and try to refrain from moving for one hour until my battery is fully charged. Then, all I have to do is repeat the whole lovely procedure for my other neurostimulator. So far, it’s one side at a time but I’m hopeful I can map out a way to charge both sides simultaneously as patience is not one of my virtues.
CAVEAT: During charging, I look like a suicide bomber with the bold black harness holding the antenna device strapped across my chest and the handy Patient Programmer clutched in my hand. Lesson learned: NEVER, EVER charge in public…I’d frighten the daylights out of everyone around me!
Posted in Health
Tagged Activa neurostimulator, Battery, DBS, DBS therapy, Dystonia, Health, Involuntary movement, Medtronic DBS Therapy, Movement disorder, Neurological disorder, Neurosurgeon, Neurosurgery
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.
Notwithstanding the daily roller coaster ride presented by my Dystonia, my feet have led a relatively ho hum life, long relegated to the safety of Aerosoles’ “Forgive” model and a sparing assortment of sneakers, plus a few pairs of carefully chosen and largely unexciting boots.
So fancy me, perched on a footstool in DSW surrounded by treasure troves of ladies footwear in an endless variety of heights, shapes, styles, sizes, fabrics and colors – feeling as deliciously decadent as the most luxurious chocolate dessert. Gingerly, I eased my feet into a pair of 3 inch black suede pumps, thinking, like the Little Engine That Could, “I think I can, I think I can,” and, just like that shiny blue engine, I actually could! Suspended in a state of disbelief – and by a pair of magnificent for-me-miraculously-high heels, I strutted across the room, a battery-powered cyborg towering over the profuse displays of ladies shoes surrounding me!
Postscript- Notwithstanding my frivolous purchases, in my world, practicality continues to reign supreme. I wear my new treasures sparingly, storing them safely in their cardboard boxes nestled in crinkly tissue, visiting frequently for a joyful peak.
Posted in Life
Tagged DBS, DBS therapy, Dystonia, Happiness, Health, Heels, Independently mobile, Medical device, Medtronic DBS Therapy, Movement disorder, Neurological disorder, Optimism, Positive thinking, Shoe, Shoes, Shopping
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.”
I stand before you “Pam 2.0” – action-oriented, driven and efficient – roaring out of the gate to tackle my errands and responsibilities with the vigor of an NFL linebacker. I’d never grasped the smooth side of multi-tasking or the effervescence of living life on the run. Dystonia erected a prison of limitations constraining my every effort…in ways even I didn’t fully appreciate. Sojourns out of my neighborhood loomed daunting. Rain or inclement weather provided a convenient excuse to stay home. For many years, life passed before me in lackluster shades of grey. My involuntary movements and their psychological toll crowded out the innumerable possibilities that lie within arm’s reach when we’re not squandering energy struggling with basic bodily operations. Now I feel free as a bird spreading her wings for the first time.
They say life is about the little things. For me, life is about a wealth of glorious but supremely basic minutiae virtually invisible to most of us…empowering us to enjoy a magical day!
Posted in Life, Uncategorized
Tagged DBS, DBS Programming, DBS therapy, Deep brain stimulation, Dystonia, Gait, Independently mobile, Medtronic DBS Therapy, Mind-over-matter, Movement disorder, Neurological disorder, Neurosurgery, Optimism, Perspective, Positive thinking, Walking
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
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
For those wondering how the prospect of two “awake” brain surgeries becomes palatable, let’s consider my relentless left foot, which seizes every small step as an opportunity to insist on an arduous detour. Walking takes on a whole new “twist” when the ever-present intervening destination is your next forward-intending movement. Even the shortest sojourn with my puppy becomes a true labor of love.
The upper echelons of the thermostat – even relatively moderate temperatures – stand amongst my triggers. At the onset of spring, exhaustion settles in for a multi-season stay, sentencing me to a summer of heavy breathing punctuated with plentiful naps. Ambulating ceases to be a means to an end and becomes an all-consuming focus, draining every ounce of my energy at the speed of light. As an added bonus, my tortured summer strolls invite back pain to settle in for an extended stay.
Surgeries anyone? Sign me up!
Posted in Life
Tagged DBS, Deep brain stimulation, Dystonia, Fatigue, Force, Health, Involuntary movement, Movement disorder, Neurological disorder, Puppy, Puppy love, Stress, Summer, Walker, Walking aid
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
Man has long pondered the question, “Are we alone?” Surely, in the immeasurable depths of the Universe, full of untold galaxies, there must be some planet that supports human life forms…
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
Posted in Inspiration
Tagged Carrie Run, DBS, Dystonia, Health, Hope, Long-distance running, Marathon, Movement disorder, Neurological disorder, New Balance, Super power
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.