Script for an Introduction to Deep Brain Stimulation for Parkinson’s Disease

(Editor’s note: In September this year I was contacted by members of The Ohio State University’s medical school asking to put together a script for a short video on DBS for PD. Below is that video and an edited version of that script I wrote with Gina Lupino, a friend who has also gone through DBS for her form of Parkinson’s disease. With input from Jennifer Sharma, MD and Samuel Burke, PhD.)

What is DBS?

Short for “deep brain stimulation”: six inch long electrodes placed deep inside the brain, connected to a battery surgically placed in the chest through electrical cords tunneled through the neck. 

Why do we need DBS?

Deep Brain Stimulation (DBS) offers a promising symptomatic solution for some very debilitating forms of neurological diseases such as Parkinson’s disease. Parkinson’s Disease (PD) is a motor disorder believed to be caused by the loss of dopaminergic neurons in the substantia nigra. The initial treatment of PD involves replacing dopamine through the administration of levodopa/carbidopa, otherwise known as Sinemet. It should be emphasized that our current treatments only alleviate symptoms rather than reverse and/or cure the disease. Sinemet and the various dopaminergic medications have side-effects that can be as disabling as the disease themselves as those diseases progress. 

Advanced therapies such as DBS can be utilized as an adjunct to conventional therapies. The electrodes provide stimulus to help replace what is lost due to the degenerating dopaminergic neurons; the timing as to when DBS should be employed is debated but current guidelines suggest using severity of symptom fluctuation, levodopa responsiveness and intact cognitive status as a marker for potential DBS response. 

Common side-effects of DBS include speech, gait and balance issues. Some patients also experience episodes of mania. In addition, certain vigorous activities that require a lot of upper/lower right/left limb control, such as swimming tend to become more difficult. 

The focal point of Sara Riggare’s PhD thesis is the gap that exists between medical practitioners and individuals living with Parkinson’s disease (PwP). The thesis is particularly notable for its impactful cover, as shown above: www.riggare.se

I (Ben) got DBS because the relentless oscillations between my medication’s On/Off cycles and the effects of my Parkinson’s disease had dwindled my functional window to a mere two hours per day. Within those couple of hours I had to squeeze in whatever I wanted to get done that day. Whether that involved playing with my niece and nephew or doing whatever work I set out to do that day or tending to basic routines like eating or brushing my teeth. Life itself seemed to be compressed into these fleeting pockets of time, leaving me unable to live the life I wanted. I also had to give up driving at the time and confined myself to living in my parents’ basement.

During that period, my medication regimen involved the ingestion of approximately six to seven tablets of immediate-release Sinemet (levodopa/carbidopa 100/25mg), coupled with around eight pramipexole tablets (0.25mg), and three to four amantadine tablets (100mg) on a daily basis. Each dose of Sinemet, if absorbed optimally, would trigger a rapid surge in dopamine activity approximately 40 minutes following ingestion. This surge would precipitate a bout of dyskinesia persisting for about an hour. I would then have a 20 minute window before my OFF symptoms would gradually reemerge.

The waveform above is a visualization of Ben’s On/Off fluctuations spanning approximately four hours. The smaller wave corresponds to his experiences with his deep brain stimulation settings properly optimized.

I (Gina) refer to those moments of discomfort as “meteorite moments” — instances when I lay there yearning for a meteorite to collide with Earth, extinguishing not only my suffering but also sparing my loved ones from enduring the agony of grieving my departure. Amid the pain, I found beauty and an interconnectedness with my spirit, as if I were an unobtrusive observer of the world. It was all a matter of perspective. Despite the bewildering and disheartening changes my body underwent, I managed to evade depression due to a certain delusion. I refused to accept the reality of my predicament. The copious amounts of medication I relied upon only added to my distress, leaving me desperately yearning for a semblance of relief.

People say that they admire my courage. When I was in hell and watching my life unravel around me in slow motion, it’s not courage that motivated me. It was desperation, hope, nostalgia along with a desire to once again experience pleasure, joy, and autonomy. Watching everything you’ve worked hard at creating fall apart, seeing the terrified expressions on your friends and family members’ faces, losing autonomy and dignity. And in some cases even losing people you love because being around you was “just too much” for them to handle. Being in that place was like sitting on a coiled spring. It’s not courage that propels you. It’s the desire to be free from compression.

  

What Does The Surgery Feel Like?

Drilling the holes through Ben’s head. Keep in mind, he and Gina were awake for their entire procedure.

Gina: Let’s start with the halo being screwed into our heads at 5:30 AM. Rise and shine! My face and scalp was shot up with lidocaine. My entire face and scalp became numb. They manually screwed a metal cage into my head. I felt kind of drunk, woosy and super teary and emotional.  As the nurse wheeled me to the OR and I said goodbye to my sister, I told her I loved her and that she was the best sister ever.  

I entered the OR, met the team, and climbed onto the OR table. The anaesthesiologist grabbed my hand. Since I was awake for the entire surgery, she was basically hanging out in case something went wrong and they had to put me out suddenly. And then came the drilling. The sound was like brushing your teeth with a chainsaw. 

(The following is an excerpt from Ben’s forthcoming book published by Springer Publishing and co-written with his neurologist, Prof. Alfonso Fasano, titled Reprogramming The Brain)

“If there is any part of this procedure that is likely to induce trauma it is this. I will never forget the sound that was made. Usually, sound is created by your ear picking up tiny vibrations of particles in the air. But in this case the sound was being ejected outwards from inside of my head as my skull shook violently to the rotating drill burring a hole through the most important part of who we are. I didn’t hear it as much as I felt it, as if the entire universe was grinding together inside my skull…

…once it looked like it was in the right spot, which I could tell by the lead penetrating the crosshairs on the screen in front of me, they began the microelectrode recording. They played the live sound on a speaker which emitted the different noises of each layer as it went deeper and deeper. Throughout the procedure I was talking and lucid. Lobbing question after question at the team, here Dr. Kalia had to tell me to shut up so they could listen and confirm they were in the right spot.

The crescendo slowly built until it reached the target and then the sound of hundreds of thousands of my own neurons excitedly speaking to one another filled the room. My brain was speaking to me, though in a language “I” could not understand. And even though I knew there was some perturbation in that sound that was responsible for the symptoms I felt, I smiled thinking of all that was going right.

Once they confirmed they were in the desired position the stimulation was turned on. It was in the left hemisphere of my brain which controls the right side of my body. I was asked to do a few simple movement tasks with my hands like tapping my index finger and thumb together as quickly and widely as possible and pretending to turn a doorknob. It was roughly noon and because of the surgery I had not taken any medication up to that point. Normally if I had gone until noon without any medication I would have had a pronounced tremor, the tapping would have quickly become slow and labored, and I would have barely been able to turn my wrist over and back. But at that moment I felt I had traveled back in time eight years to before my diagnosis. My fingers and my wrist moved fluidly. It was liberating, I was back in control. Despite being strapped to a table with my head in a vice I felt euphoric. This disease had suddenly and magically dissipated. Nothing short of a modern medical miracle.”

What is Recovery Like?

Scary to the eye and longer than you think. I felt a little better immediately after surgery and it has been getting better over time. When you’re in hell for so long and you wake up without pain, you want to do everything all at once. It was not a manic compulsion. I felt like an uncoiled spring seeking all sorts of pleasures I hadn’t experienced in so long, namely freedom and autonomy. A few weeks after surgery I ran a few miles to a local pizzeria a few miles from my house. It wasn’t the safest decision but the freedom and absence of body pain and stiffness almost felt as good as the taste of pizza. 

Like everything about getting DBS or having Parkinson’s disease, it varies from one patient to the next. Recovery time can take anywhere from one week to one year, if something goes wrong in the OR. Typically most are pain-free within 3 months, though most of the majority of pain and discomfort comes from implanting the battery in the chest and the wiring through the neck than the holes drilled through ones brain.  

After recovery, you still have to have your DBS programmed. Which can demand it’s own kind of recovery period. More on that below.

How Effective can DBS be?

New technology such as StrivePD software (patient facing version pictured above) from Rune Labs allows us to do away with some of the archaic ways we use to measure PD where patients too often are forced to travel, often hundreds of miles to clinical clinical centers, so that neurologists can capture artificial snapshots. (Known as the UPDRS – unified Parkinson’s disease ratings scale). 

On a typical day I (Ben again) will now experience about 2 hours of mild tremor, some gait and postural instability issues, and my speech does get a bit worse throughout most days. However, I no longer experience any of the prolonged and severe bouts of Dyskinesia I did before, nor do I have to deal with the crippling Off episodes, where my motor function was severely impaired, that I experienced prior to getting DBS.  

What are Programming Sessions Like? 

Programming sessions are typically done with a neurologist. The neurologist connects to the DBS wirelessly, using an app on a tablet. They can adjust the contact point used (typically there are 4 or more they can toggle between) and the frequency, amplitude and pulse width of the stimuli provided to each contact point. The goal of each session is to make adjustments until the patient has smooth motor control. Each session can take several hours until the right settings are found and most patients require adjustments every 2-6 months.

The following is an excerpt from an account written by Felek Jachimowicz, Ben’s Uncle, after he flew into Toronto to observe one such programming session:

“I spent my entire professional life practicing science, initially as a researcher at the bench and then as a leader of hundreds of researchers in a large global materials science company with numerous laboratories around the world. I published several scientific papers and am the inventor or co-inventor of twenty-three families of patents. 

However, almost all of my scientific training went out the window when, in October 2021, I took a trip to Toronto to observe a DBS programming session between Dr. Alfonso Fasano and my nephew, Beni (as he is known to us). With a tablet in his hand and Beni sitting a few feet away, Dr. Fasano was adjusting the amplitude and frequency of current stimulating Beni’s brain. With every adjustment, he observed Beni intently and asked for his reactions. It was both a scary and a fascinating process.

A few strokes on Dr. Fasano’s iPad could either worsen Beni’s hand tremor or make it disappear entirely. Beni’s physical reactions, increased or decreased tremors, weird feeling in his head, and the movement of his legs, were felt and observed practically instantaneously following the input from Dr. Fasano’s iPad. At one point in this process, I asked myself a question; is Beni human or a machine, (the image of a long-forgotten TV series from the 1970’s “Six Million Dollar Man,” flashed in front of my eyes).

Although initially disturbing, I realized at some point that such a procedure is, in principle, not that different from taking medication, many of which impart changes to our biology and brain chemistry. Still, I was profoundly moved by DBS and how far we have come in a relatively short amount of time to improve the human condition by something that would have been completely unthinkable when Beni’s parents and myself were children growing up in Poland.” 

Or, to explain what these programming sessions are like in Gina’s words: Something out of a sci-fi film where a soccer mom wearing yoga pants becomes a cyborg. 

Want more? Coming Soon in Spring of 2024…