Tag Archives: Neurotransmitter

I Need A Battery Change…NOW?

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I’ve been rolling along – sans my walker – engaging in a post-DBS flex of my muscles as I pursue a Masters in Health Care Administration. My DBS apparatus has been humming right along with me: electrodes nestled all snug in my brain, wires in place, chest batteries juiced up, remote control safely tucked away from fiddling fingers. Regular “tune ups” have ensured my DBS settings are not too hot, not too cold…but just right.

Flash forward to present day NYC, the COVID 19 panic is running rampage through our nation, social distancing the new normal. Amidst this whirlwind overwhelming the health care system, I need a battery change…NOW? Even my neurosurgeon is “social distancing.” How does he insert two new batteries in my chest via the phone?

My long-time nemesis, “Useless Why,” beckons. Why me? Why Dystonia? Why now? “Useless Why” invites me on a dead-end journey of unanswerable questions about why this is happening to me…now. But then again, doesn’t that same temptation lure us all as we collectively face COVID-19, an unprecedented and daunting challenge. Useful questions about how to get ourselves out of our untenable situations are beneficial – and uplifting. Useless questioning – why me, why now – that threatens to lead us down a path of victimization serves no higher purpose.

Whenever life threatens to spiral out of control, it’s so easy to fall into the “Useless Why” black hole. Now more than ever, we must give a positive attitude a good faith try so we don’t get zapped by “Useless Why.” Blushing brides postponing their big day, graduating seniors who won’t be marching in May. Socialites trapped in their apartments alone, star-crossed lovers rendezvousing by phone. Dystonia patients in need of Botox injections biding their time, wondering how long it’ll be before they start to feel fine. As we struggle with panic, let those sleeping dogs lie. Let’s not become paralyzed by the specter of “Useless Why.”

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!