My Brain is Bionic

That is mostly a good thing.

Leslie Davidson, age 73.

PD Diagnosis, 2011

Thanks for reading! Subscribe for free to receive new posts and support my work.

Bilateral DBS to globus pallidus, 2020

January 24, 2021

Thanks to the dyskinesia-dancing, my Fitbit registers 10,125 steps while I sit in my daughter’s truck for the seven-hour drive to Vancouver. Dyskinesia is the involuntary, dancelike movement caused by the medicine I take to manage my Parkinson’s disease.

I am on my way to Vancouver, in the time of COVID, to get long-awaited, deep-brain stimulation surgery. It won’t be a cure but it should mitigate the most bothersome symptom.

I realize, on the morning of the surgery, October 27, 2020, that this day is also my wedding anniversary and my eyes fill with tears. My husband and I were together for over 40 years. He died in June 2017. I miss him still. It takes four tries and four different nurses to get my IV started.

My neurosurgeon, “Sorcerer” in this narrative, rubs the top of my buzzcut scalp.

“Nice,” he says softly.

And then he pushes the stretcher to the MRI lab. I am touched by his kindness, his attentiveness.

MRIs are loud! Really loud!

The young Scottish neurosurgeon, “Sorcerer’s Apprentice”, doing a fellowship with my doctor, fits me with a surgical halo. Halo. Funny word for the heavy metal brace bolted to my skull. It takes a while. He tugs and grunts; I recite poetry in my head. Yeats and Frost and Mary Oliver get me through.

I don’t recognize myself in the photo my daughter takes of me in the halo. Bald. An awkward smile. I look nothing like an angel.

There are a lot of people in the operating room when we get there. They all introduce themselves. I appreciate that.

“In our family, we call this “getting my magic wires,” I tell Sorcerer and his apprentice. They laugh a little.

Later, Sorcerer says, “I like that, ‘magic wires.’ We may use that from now on.”

He advises his Scottish counterpart on how to cut my scalp to create the skin flaps that will be peeled back to expose my skull for the drilling of the two holes into which the magic wires will be inserted. Their endpoint is in an area of the brain called the globus pallidus. Globus pallidus. It sounds like a Harry Potter charm. It begs to be said with a wand flourish.

“Nice curved lines,” Sorcerer coaches. “No sharp corners.”

Am I Apprentice’s first DBS surgery? I wonder.

I am not concerned. Someone has to be first and I feel in very good hands. Or maybe there are really good drugs in the IV.

“Magic wires time!” he says cheerfully.

The drill is loud. Really loud. Nancy, the lovely nurse, holds my hand. My mantra begins: Please guide his hands. Please guide his hands. Please guide his hands before devolving to: Don’t hit grey matter. Don’t hit grey matter. Don’t hit grey matter. He doesn’t. It goes on and on and on. Then it’s over. The drilling, that is. The halo is uncomfortable, restrictive … the benign cousin to a medieval torture instrument.

Nurse Nancy asks me if I’d like music.

“Beatles, please,” I say because I’ll know the words and be able to sing along in my head—I’ve run out of poetry. The first song is “Here Comes the Sun”.

The probe goes in, first one side then, the other. The surgeons talk to each other in co-ordinates and millimetres. The senior neurosurgeon holds my hand to monitor my reaction. I repeat “4, 5, 6” making sure my speech isn’t slurring. At one point, I find I can’t easily say the numbers. They back up and try again. Thank you, magicians.

Flashing lights, like tiny starbursts, bloom on the edge of my vision. Sorcerer’s Apprentice has never witnessed this response before. Sorcerer asks me to describe it for him.

“Bright,” I say, “like sparklers. Kind of cool.”

That makes them chuckle.

“Old hippie,” I add.

There are definitely good drugs in the IV.

The halo is removed. Thank goodness. I think of little children strapped into car seats and understand why they go ballistic.

I get to sleep for the final phase of the surgery, when the battery is placed in my belly. Typically it goes in the chest, but I am too thin. After all, I have been moving non-stop for years.

I wake in the recovery room. My head hurts a little. My belly hurts more. The battery feels much larger than the “deck of cards” I was told to expect.

“You did a good job,” the surgeons tell me. “It went really well.”

Thank you, I say. You did a good job, too.

I mean it. But this is not the end. I need to heal before my device can be activated in six weeks’ time.

The next day, I am discharged and my daughter and I slowly walk the three blocks back to our hotel.

The surgery seems to have settled the dyskinesia in my upper body. When we drive home, I clock under 1,000 steps for the entire day.

This beautiful calm does not last. Three weeks post-surgery, I am full-body dancing again. But the lighting of my neural Christmas tree is not too far away.

When the day comes, my daughter and I meet the DBS specialist nurse in the same small office in which I had my pre-operative assessment. That was a gruelling process, several hours long, during which we confirmed that dyskinesia was my most disabling symptom and therefore the focus of the surgery.

The “turning on” of my magic wires is different, a gentle, subtle drama. Working with an iPad on her lap, the nurse finds the sweet spot settings through trial and error, a process that triggers multiple sensations from tingling, to nausea, to a full-on Starry Starry Night explosion behind my left eye.

At the end of all the tweaking, my daughter takes a short video with her phone.

Hey, Mom, she asks, “What just happened?”

“I’m sitting still,” I answer, and I let the tears fall.

I am sitting still. I am standing still and walking normally. My foot doesn’t roll up on its side and I have experienced no muscle cramps, no hand, or leg tremors since that day. I still have Parkinson’s. The disease has many ways to make its presence known. Symptoms may return and new ones lurk somewhere in my future. But for now, and possibly years to come, I get this sweet return to some of what I was. Who I was.

I believe in magic.

FEBRUARY 12, 2025

It is just over four years since my DBS surgery. When I read what I wrote at the time, I find I am in tears. Happy? Sad? I’m not sure which. Maybe both.

I am intensely grateful for the mitigation of the dreadful dyskinesia that made me hesitant about eating in public, that drew stares and comments from strangers. It consumed the lion’s share of my calorie intake and left me gaunt and exhausted. Gratitude has always made me emotional. These days any strong emotion turns me into a puddle. I am embarrassed by how much and how easily I cry. I read about “pseudobulbar affect” or PSB and I think, “that's me!” It is, according to the Cleveland Clinic, “a neurological condition that causes outbursts of uncontrolled or inappropriate laughing or crying. These episodes don’t match your internal emotional state.” I also read that DBS can trigger PSB, but usually when the surgical target is the substancia negra, or STN and mine was the GP, globus pallidus—Parkinson’s disease (PD) has introduced me to a lot of acronyms. I do love to laugh but I don’t think my laughter is out of control, the way my crying is. I learn, too, that Parkinson's itself can cause PSB; I wonder if is just part of my disease progression. It has definitely progressed.

I had forgotten I wrote “I am standing still and walking normally.” I don't walk normally any more. I am considerably slower than I was and rely on my hiking poles to negotiate uneven sidewalks or the slightest downhill slope. I am brought to complete standstills by my reluctant left leg and unresponsive left foot. That damn left foot! When it isn't playing dead, it rolls up on its side, and my toes have a whole repertoire of lifts, curls and twists. Both feet cramp painfully the minute I stretch my legs out in bed, and leg cramps plague my I’m-so-tired-why-can’t-I-sleep nights. I stutter when I am speaking. I stutter-step, hard to control, tiny, rapid steps characteristic of Parkinson’s, that trip me up when I initiate walking, or turn corners, or stand up, or try to walk backwards.

Big steps! I whisper to myself . Wide stance! Big Srep!

I stumble manty times a day but I usually manage to save myself. Good thing, too, because my latest bone scan shows full-on osteoporosis. I'm frustrated by that. I've worked so hard to prevent Swiss cheese bones from developing. Yet, that is what I’ve got. My left hand has developed painful arthritis I unconsciously exacerbate with my constant clenching. This day’s final indignity is the freezing of my gait— a new symptom. I have been dealing with a mild form for years, even before I was diagnosed.

OK legs, I coach, as I try to exit the car. You can do it! Swing!

My right leg usually listens and behaves, but the left one is

a real brat. I grab hold of either side of my thigh and lift it up and over. I’ve discovered that my brain-leg connection is much more effective if someone else gives the command. I have to laugh at the way it listens to anybody but me. The oddities of life as a parky are humbling. It is a very weird disease

Is this litany of typical parky complaints the reason I am so weepy? If so, I may need to channel my dour Scottish grandpa’s admonition to “stop yer greetin’^[1] or I’ll gie ye sommat to greet for.”

I can wear off profoundly. My “off” state manifests in such difficulty moving, thinking and speaking, that going to bed is the only option, no matter what the time of day. I sink into sorrow, when short, profound depressive episodes abandon me to hopelessness and fear. Though the sadness is temporary, and lifts when my meds kick-in, I feel a nervous-making vulnerability. What has the disease in store for me? I have indescribable respect and empathy for those who must deal with depression that is neither brief nor so easily remedied.

I have messed about enough with the timing and dosage of my levodopa-carbidopa, both CR (controlled release) and IR (instant release) to come up with a combo-strategy that works… kind of… depending on time of day, how much I’ve slept, when and what I eat. Protein scares the bejeezus out of me. If I eat a normal amount, I will pay with an off episode. Restricting my protein consumption is hurting me in less dramatic ways, but hurting me nevertheless. It’s a conundrum. Should I be crying over spilled conundrums?

Unlike Michael J Fox, I cannot say, “I have Parkinson’s. It does not have me.”

Parkinson’s has me. It is the boss. It brings me to my knees almost every day. Reason enough to despair? Reason enough for sad tears? Reason enough for “greetin”, Grandpa? It brings me to my knees, but I always, eventually, get back up. The Parkinson’s goblin has me but it does not have every bit of me. Without my magic wires, would I have had the strength to deal with the dyskinesia, as well as the unpredictable progression of the other symptoms, these last four years? Without the DBS, would I be able to get back up?

Despite the brain surgery, Parkinson’s is shrinking my world. I push back with exercise and supplements. My twice weekly sessions with a wonderful and very knowledgeable personal trainer, yoga on my living room floor, dancing in my kitchen, walking as much as I can whenever I can, are all paying off. I'm not the person I was but, if you met me for the first time and didn't know, you would not easily identify me as having Parkinson's. It's not that I mind people knowing, because I don't, not at all. I mind experiencing the symptoms to the extent that, if you can see them, I am really experiencing them. I have more than my share of love in my life My connections to family and friends are deep and nurturing. My salvation lies in practising gratitude, in counting blessings, and in laughter.

In 2013 I wrote a spoken word piece that has become my parky party trick. The whole thing takes about three minutes, if I speak really quickly. It was a truthful telling then and it is a truthful telling now.

This is how it ends:

there is nothing more effective, joy protective,

jubilation celebration of the spirit

than a belly full of hilarity

it is the stake driven straight

into the shaking quaking heart

of narrow degenerating absurdity.

You might say… I would agree

I have become I trite cliché

of carpe diem, glass-halfful-ness

but this much for sure is true

it is not virtue

but luck or DNA

that holds at bay

those jackbooted soldiers of depression

when others wiser, kinder, stronger

must suffer their oppression

I recognize this gift

this saving grace

this blessing that permits

my determined inner voice

EMBRACE THIS DAY! she cries

there is no other choice

My magic wires have returned me to a life in which there are restaurants, and movie theatres, strangers who don’t stare, and lots of dancing, but only when I want to.

I do have day, or parts of days, when I am sad and bedridden. I miss things. I miss things. Special events and being with people, and, when that happens, I struggle with disappointment. So much of my life is dedicated to disease management and there is so much I want to do. I am still becoming the person I want to be. There are so many people I want to know better. There are so many books I want to read. So many things I want to write. But I know I am a lucky woman. I sometimes, selfishly, want more. And yet I have enough. Enough for gratitude. Enough for laughter. Enough for happy tears.

If the benefits of my magic wires last a decade, or just another year, I will consider myself lucky. I would do it again. In a heartbeat., I would do it again

I still believe in magic.

WC:2386

---

^[1] Greetin’ = crying

Thanks for reading! Subscribe for free to receive new posts and support my work.