I Will Survive!

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…

Fiddling

In 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.

The Medical Sideshow

All too often, there’s a sideshow to chronic illness: our treatment regimen! Let’s take my pills. They’re small, white (or yellow) and round. They “control” (I didn’t say “cure”) my Dystonia but wreck havoc with my body. My meds require me to walk a medical tightrope juggling multiple balls in the air, engaging in a precarious – but common – balancing act.

My neurologist and I make all sorts of adjustments. We go down on one culprit with particularly distasteful repercussions until my walking worsens. Then it’s time to regroup. We add meds to address side effects, which in turn make their own statements. Understand, I’m an impatient person who rarely acts incrementally. I embrace BIG CHANGE. Not with my pills. The process of going up and down, not to mention trying new meds, is E-X-C-R-U-C-I-A-T-I-N-G-L-Y  S-L-O-W. But I appreciate the need to drive with caution and intermittently engage the brake.

The “games” never end. I had to discontinue a long-standing drug that caused my blood count to plummet dangerously. Another regular exerts undue influence on my blood labs, rendering them confounding to everyone except my neuro. Then there’s the trial and error of “new” treatments. During a clinical study, I became convinced a med was making my Dystonia worse and hightailed my way off that highway. I speak from experience when I say serious drugs merit serious vigilance.

I reap the benefits of a highly knowledgeable and careful neurologist. However, responsible health care doesn’t end with a trustworthy physician. As patients, we’re the ultimate arbiters of the substances we ingest and interjecting a healthy dose of caution is prudent. Do the research, investigate your options, read the fine print, ask probing questions, and trust your instincts when it comes to side effects – after all, you know your body best.

With World Health celebrated throughout spring and summer, the American Recall Center has embarked on a campaign to promote medication safety (check out their tips below). The American Recall Center website is an invaluable resource for prescription drug and medical device recall information and other healthcare topics advancing informed medical decisions.

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!