Deep Brain Matters
dNaga performed Deep Brain Matters in the East Bay Dances festival on June 3, 2018, presented by the Oakland Ballet Company. The dance was performed to interviews with Dr. Helen Bronte-Stewart, who talks about how she got into neurology and discusses what Deep Brain Stimulation (DBS) is. Also included in our sound score is an interview with Scott Holloway, who discussed his experience undergoing DBS surgery.
dNaga dancers
Yael Berrol, Ellie Kerwin, Chiara Kovac, Eric Larson, Sema Lew, Leila Massoudi, Claudine Naganuma, Alex Ajose Nixon, Sylvie Rodgers, and Holly Young
Dancers with Parkinson’s (all of whom have undergone DBS surgery)
Martha Friedberg, Gary Turchin and Cathy Quides
Here is a poem by Martha Friedberg inspired by her experience of Deep Brain Stimulation:
THINK ABOUT THAT
My Adventure with Deep Brain Stimulation for Parkinson’s Disease
It was cold in the OR.
I lay, shorn, immobile, my head screwed
Into a frame. My halo?
My eyes seeing hazily without glasses,
Without my neck swiveling.
Ever think about how important your neck is to your sight?
I felt pounding and thought the team was still screwing in the frame.
Found out later it was my skull being opened.
Think about that.
The brain’s speech center, being close to the Subthalamus Nucleus, the target for the lead
being inserted, so I was asked several times to say
Methodist Episcopal.
I wanted to laugh, Jewish girl, brain opened, saying
Methodist Episcopal.
I was really good at that, but I couldn’t figure out how to spell
WORLD backwards. Just couldn’t.
Think about that.
It was cold in the OR.
My neck muscles were cramping
and mind over matter wasn’t working.
Again and again, the neurosurgeon moved my arm, my leg, while the senior bioengineer in
functional neurosurgery watched the neurons firing on the screens.
Think about that.
Twice someone called out “X-ray” and everyone scurried from the room,
Except me, of course, reappearing momentarily.
I have those X-rays, gold teeth glistening, souvenirs.
They made it to the STN target in one pass – geniuses.
I can’t remember the transition to full anesthesia when the team
Tunneled the lead down my neck (just a bit too short I realized later)
and implanted the pulse generator in my chest.
Think about that.
Six and a half hours in all,
Then I awoke – in pain, shaking, tremoring, distressed.
The neurosurgeon came to see me. I was a mess. He left.
“Don’t let Emily see me like this”, I said to a nurse.
In 20 minutes or so, I calmed down and was wheeled into my private room.
Emily, devoted, beloved, slept on the pullout couch.
The nurses were perfect, attentive, woke me every hour.
I was determined to make it to the bathroom, detached from tubes and lines.
Team members, Eric, the bioengineer, and Ivan, the physician assistant,
Came to see me, pleased with their one pass success.
One night was all, then I went home, to begin the new phase of my life
With Parkinson’s.
For two weeks before being turned on, I was tremoring, muscles rigid, tender at skull and chest
incisions.
Then, I was turned on by Erin, my nurse practitioner programmer.
Tears welled in my eyes. Tremoring stopped, rigidity melted away.
Think about that.
Today eight months later, I have wormy, lumpy feelings in my skull.
My neck muscles sometimes cramp. I call this phase Phantom PD because you can’t see it, but I
can feel it.
I would do it again, 100%, this mountain climb was worth it
Where are my thoughts – in my head? In my brain? What does it mean,
Neurons firing, communicating with each other?
Think about that.
Oh, yes: D-L-R-O-W
– Martha Friedberg
Photo courtesy of Oakland Ballet Co.
