How’d It Start

So, how did my tremulous life begin? I guess, as with most things, it started when I was a child. Because of the side effects of the asthma treatments available in the Dinosaur Age, I often had shaky hands. Theophylline and Marax – drugs few doctors are even familiar with today were all that were available for wheezers back in the 1970’s – left me with occasional hand tremors that were always bilateral and never constant. But… those shakes did make it easier to hide what I would eventually learn was a Parkinsonian tremor during the gap between when I first noticed something was amiss and my diagnosis.

It was a couple of years ago….  I can’t pinpoint exactly when that I noticed that only one hand would shake when I held out both in front of me.  Why? I had many theories, oh, so many theories… a problem with a nerve, tendon, muscle – any one of those bloody things within my flesh that work in mysterious ways. Something had a short circuit or some other mild malady and made my left arm twitch. All the time. I tried using lighter weights at the gym. Twitch. I gave up alcohol for a week.  Twitch. I got deep tissue massages. Twitch. I… well, just fill in whatever whacky blank comes to mind… because whatever you posit I likely tried it or imagined it. And each time the result was the same. Twitch.

“It’s probably an essential tremor,” said my General Practitioner in July 2015 during my annual physical. “They’re common in people with an under-active thyroid,” he continued. This was a welcome speculation.  Along with many of my female relatives I have a lazy-ass thyroid.  A wave of relief. A pause. “Nevertheless, I’m going to refer you to a neurologist just to ‘make sure.’”

And so my life changed. Although I didn’t know it at the time.

This was in September shortly after the school had year begun. The morning of the doctor’s visit, I stared at my hand, willing it to be still. Twitch. I knew that this consultation wouldn’t yield an all clear – so I didn’t tell anyone I was going.  I’ve been told that this – along with many of my characteristics – is odd. But for me facing the unknown alone made it less real.  I don’t subscribe to the ‘a burden shared is a burden halved’ school. Yes, my many neuroses are the gifts that keep on giving. But even my denial could only go so deep. I never once thought of delaying or cancelling the appointment.

“Please walk down the hall again – without your hand in your pocket this time,” instructed the neurologist to whom my GP had referred me ‘just in case’.

“Oh, sorry. I’ve been hiding it so long, it’s habit,” I replied. Funny how denial becomes habitual so easily.  But active denial takes energy. A lot of it. Thinking about what to do with this extremity to hide its constant movement – sometimes trying in vain to hide it from myself – takes vigilance. Pockets were perfect foils. It was oddly liberating to walk down the hall with my arm just hangin’ out. (Turns out I don’t naturally swing it in time with my stride – like I do my right arm.  This, I would learn, is a Parkie symptom.) I walked down the hall several more times before performing other, seemingly mundane but in fact clinically significant tasks.

Then I sat down –not on my left hand, for the first time in a while.  The neurologist was staring at me intently. That sort of intent, diagnostic stare – the one that rarely results in an ‘all clear’.

“This is not an essential tremor,” the doctor started off. A part of me knew this, or else the appointment would’ve been shorter – and the doctor’s expression less serious. “I want you to have an MRI to make sure that your brain is okay,” she said as calmly as anyone can possibly utter this phrase. “You don’t blink very often and your face isn’t particularly expressive,” she continued. Pity I can’t play poker – this flat affect thing could be an advantage.

Thus, on a postcard-perfect October morning I was on my way to a special, closed MRI. I was very calm – thanks to the good doctor’s dose of Xanax to insure that I’d get into the machine.  The technicians were kind and patient.  They talked me through the whole, procedure – clearly I’m not the first claustrophobic they’ve seen. Would the answer to my twitch be revealed by the noise and lights?

A week later I got a voicemail from the neurologist saying that there was nothing to be concerned about. When I returned the call that same day, the receptionist told me that my MRI was normal – and that I would get a letter confirming this shortly.  “Thank you,” I said.

Doors One and Two were closed – no brain tumor and no Multiple Sclerosis. Relief? Yes – but I did have a daydream about there being a non-malignant brain tumor, ya know, the one type in the entire universe that is easy to snip and cure? No bi-annual scans, no radiation follow up – just a few days in the hospital and voila!  I’d return to my life with a shaved scalp – which of course would’ve revealed a beautifully shaped head. I’d look great and tell people, “No, it wasn’t Atkins, it was the non-malignant tumor diet,” when I responded to compliments about my suddenly svelte physique. Ah… the joy… the once-again twitch-free life I fantasized about.

I looked up Parkinson’s Disease on a few websites. I drank a few extra glasses of wine. I didn’t hide my tremor as carefully… which is why one Sunday afternoon my friend looked at my trembling left hand with a flash of horror.

“Oh, Yeah. That. Well I’ve had an MRI and it’s not a brain tumor or MS,” I replied as her jaw hung slack. She laughed and complimented my tight-lipped reserve.

I am blessed – this dear friend happens to be a neurologist. So instead of waiting for an appointment sometime in January, I was in the office of the Head of Movement Disorders a few weeks later. On Thursday, November 5^th, 2015 I learned what my pal, and even a part of me, had already known.

“Could it be anything else?” I asked as tears filled my eyes for the first and only time during this journey—at least thus far. “No,” came the answer. And so this new chapter began.

I don’t know how I got this twitch. I don’t know why. I do know that door number three was the best I could’ve hoped for when I was presented with the neurological options in September. I know that I am blessed with friends who call in favors to make sure that I am squeezed into the schedules of in-demand doctors. My friends and family laugh with me whenever possible – and would answer the phone any time day or night if I needed to cry. I have a husband who assures all those who query that I’m as mean as I ever was and a medical team that is stellar.  I have hope. I have humor. I have a full and blessed life – albeit with a twitch.  Who cares how it started. I’m going to continue for twitchy, joyous decades yet to come.