Category Archives: Health

I Will Survive!

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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…

BATTERY emPOWERED FEMALE

16542931_sLast 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!

My Starring Role During Neurosurgery: The Woman In The Iron Mask!

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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…

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My amazing Mount Sinai neurosurgeon is second to none!

 

Making Lemons Into Lemonade!

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

Surgeries Anyone?

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!

 

Fiddling

13185761_sIn the movement disorder world, “fiddling” has nothing to do with a musical instrument. Like the baby bear sampling bowls of porridge, I’m forever fine-tuning my meds in an overarching effort to get things “just right.” My “fiddling” is motivated by a precarious balancing act featuring a myriad of distasteful side effects encroaching upon my quality of life.

Patients be warned: “fiddling” is for the bold and the brave, every adjustment laden with a risk-bearing proposition. In my present alternative reality, I’m battling the lingering damage inflicted by a downswing in my main med even though I’ve climbed my way back to my prior dose. Voila, the sole result presented by my most recent game of risk is the companionship of my walker. Apparently, elimination of my parade of side effects requires elimination of my anticholinergic, a venture to the Deep South I’ve yet to undertake.

But there’s a moral to this story as I seek to live life without regrets, well understanding that our meaning decisions unavoidably lack the luxury of hindsight.

Whodunit: The Misadventures Of My Mutant Ninja Protein

Too often, I find myself apologetic over hurdles that come with Dystonia: I’m sorry it’s difficult to understand me…I can’t walk across the park…I need more time to finish this form. Worse are the silent apologies I make to myself. Why do I perpetually raise excuses for my condition as if responsibility for this annoying hoopla falls squarely on my shoulders? I possess greater control over my runaway temper than my speech or my stride. Dystonia arrived as an intruder on my doorstep, robbing me of some of my dearest possessions: clear speech, even gait, smooth handwriting, contraction-free enjoyment of life.

16542915_sThe perpetrators of this medical crime lurk deep inside my brain committing all kinds of chemical mischief. I’ve participated in a bunch of “line-ups” – ironically, I’m the one who’s scrutinized – but while a culprit surfaces in a blood test, the actus reus can’t be captured in a pretty picture and my “head shots” are dead-end streets. We know Mr. DYT1, my uninvited houseguest, orchestrates a mutant ninja protein – Torsin A – who’s ostensibly a key player in a conspiracy of neurological proportion involving a perplexing hoist of my brain with a modus operandi stumping even the most seasoned investigators. To complicate matters, a host of suspect genes orchestrating their own villainous behaviors are implicated in different forms of Dystonia.

On the bright side, I function as my own “neighborhood patrol,” doing my best to combat an ongoing bodily offense. I undertake every effort to keep the crime labs busy, proffering skin and blood samples, funky PET scans, functional MRIs…accompanied by eyewitness accounts of the damage inflicted on my landscape. Meanwhile, I remain a walking crime scene apologizing for acts I can’t explain. Perhaps my amends are best bestowed on the objects of my temper…

One-Stop Shopping

12980877_sLast 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:

Promises, Promises!

12864551_sI 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.

Meet My Family

Edited 6349133_sWelcome to my movement disorder family. We’re a motley crew of kissing cousins: Parkinson’s (the family favorite), Ataxia, Athetosis, Ballismus, Chorea, Dystonia, Huntington’s, Myoclonus (not a Greek island), Restless Legs, Tardive Dyskinesia, Tourette’s, Tremor…plus honorary member, Functional Movement Disorder. I’ve never met Michael J. Fox but it’s ironic that he starred in a show called “Family Ties,” which describes our relationship to a “t.”

There are two basic sides to our clan – the tortoises and the hares – but with a confluence of jerky motions, twisty movements, strange postures, twitches, shaking, stiffness, and shuffling, even we get confused distinguishing one another. Our overriding common denominators are dysfunction of the nervous system causing a paucity or excess of movement, and unsolved mystery.

Family reunions stand as tumultuous affairs that tip the Richter scale. Pre-printed nametags are de rigueur so no one has to write. After competing to see who’s the last to spill their coffee, we hit the dance floor for a Macarena that looks more like a bunch of campers fending off mosquitoes while stomping out burning embers barefooted. Back to the table for chocolate fondue. We converge on the pot with trembling prongs, trailing globs of liquid all over the tablecloth in decorative swirls. Next year, how about Jell-O for some dessert empathy! Of course, no reunion is complete without our banner song. Before departing, we gather for a telling round of the Hokey Pokey: You put your whole self in, and you shake it all about…

Whether our movements play out in slow mo or lurch along at the speed of light, we run the same race as everyone else, pounding our own unique pace. Take a moment and join the party, perhaps even shake, rattle and roll. We’re rockin’ out the dance floor so come on, baby, let’s do the twist!

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Introducing My Meds

Medications “treating” Dystonia are like mediocre relationships – we make do notwithstanding their pitfalls because there’s nothing better waiting on the horizon. Admittedly, we tend to engage in a bit of a juggling act, no one pill supplying everything we need. Similar to Romeo and Juliet, we lack the official seal of approval and must carry on our affaires de coeur “off label.”

My main squeeze is Trihexyphenidyl, a mouthful. He’s famously known as Artane but you can call him Art. Think of him as the steadying influence in my life. His ethnicity is anticholinergic. No, he’s not from Anticholinergia but harkens from the same family as your friendly allergy meds, blocking the work of a neurotransmitter called acetylcholine that seems to have a hand in screwing up my muscles. Just as women haven’t figured out men, no one knows why Art’s so effective. Believe me, not every Dystonia patient falls under his spell. Our relationship is fraught with issues – all his doing – but I’m not giving up on him until someone better comes along.

Sinemet is an old flame I keep around for kicks (or avoidance thereof). Our chemistry’s rather simple: he introduces a pop of levodopa to help me synthesize dopamine, a sine qua non for treating Parkinson’s – on loan to little sister and no one’s miracle cure. The underlying secret to our success remains a mystery (neurotransmitter balance perhaps) but why fiddle with a good thing?

Finally, meet Zonegran (“Z”). His politics include anti seizure, which is an interesting perspective on the machinations of my muscles. Z is a relative newcomer to my stable of suitors. He replaced a childhood sweetheart in my mad-capped game of Spin The Bottle and I never paused to consider whether I needed anyone new in my life.

This medical “three-way” adds a crazy sideshow to my three-ring circus. Like all Dystonia therapies, they wax far from ideal, but they’re the ones I love to hate and hate to love!

The Movement Disorders Examination

My Fabulous Neurologist!

Touch your finger to your nose, then straight out towards the finger puppet. Oops, that was pediatric neurology. Feet on the floor, heel – toe, heel – toe. Now we’re going to draw spirals and write “today is a sunny day” while my arm engages in kinematic calisthenics. Then it’s time to strut my stuff. Occasionally, I even get to star in my own movie without a screen test. Julia Roberts, eat your heart out. Meanwhile, I daydream about shopping with my neurologist at Bloomingdale’s, where she lectures the evil saleslady on how that stunner of a cocktail dress will most definitely not be paired with heels but looks spectacular with my Aerosoles!

Once this mini workout session is concluded, we gab about the state of my movement affairs and the tease of a better tomorrow. Perhaps there’s a fresh-faced research study involving animal models (no, not Miss Piggy prancing down a runway in Versace). While the promise of medical science is encouraging, my tastes run to available and personally impactful therapeutics. Our version of walking on the wild side is to fiddle with my meds by s-l-o-w-l-y changing the dosage in excruciatingly small increments, a regimen that doesn’t sit well with my ever-burgeoning impatience. Really, is one tiny pill developed specifically for Dystonia too much to ask?