Still new to the hospital layout, I asked a nearby surgery resident where the neurosurgery inpatient ward was. It was 10 p.m. and I was wearing my short white coat, a length that signified my status as a doctor-in-training, so the natural reply was, “What are you still doing here?” I had just finished the busiest day of inpatient medicine on the long-call service at the local Veterans Administration hospital. “I’m looking for a neurosurgical patient recovering from deep brain stimulation (DBS) surgery.” This was the biggest, most involved phase of DBS surgery – electrophysiological mapping and implantation of the deep brain stimulation leads. If the leads were accurately placed into the subthalamic nucleus of the basal ganglia, it could mean a significant reduction of both the bradykinesia and the “pill-rolling” Parkinsonian tremor. With the resident’s help, I eventually came to a room tucked deep in the corner of the 7th floor and found a man sleeping adorned in a head dressing fit for a mummy. It was Russell.
…
It was January 2019, and I was in the middle of my second year of medical school. Amidst the frenzy of daily emails, I found one with the subject line, “DBS Longitudinal Patient Program.” It involved being paired with a patient who was being assessed for DBS surgery for the treatment of Parkinsonian tremor. This was different from the traditional method of following a doctor we were used to in medical school. Over the course of a day, a multidisciplinary team of physicians and specialists would evaluate a patient’s candidacy for brain surgery and discuss it in a round-table group conference format. I signed up and was matched with Russell Swanson, a former nuclear submarine electronics engineer and avid skier diagnosed with Parkinson’s disease several years prior. A few weeks later I met Russell in the waiting room of the neurology department. He, his wife, and his tremor sat resting in the corner of the room.
“Mr. and Mrs. Swanson?” I asked.
“Yes, and who are you?”
“Chris Lama, the medical student who will be joining you throughout the day, if you’ll have me.”
“Oh, we get a student? Great, do you know where we’re goin’?” Mrs. Swanson asked. I could tell she had been sitting with that question for too long.
Lynn Swanson, with a New England twang and slightly short of breath, asked where I was from and how I ended up here in this waiting room. It wasn’t often we were given the opportunity in the preclinical years to observe the medical process from the patient’s perspective. More often than not, we were interacting with “patients” who were paid actors. I told them how my interest in surgery prompted my desire to be a part of this program. Lynn looked at me like I was the bravest person she had ever met. She spoke with sincerity and a kind heart. Russell Swanson was her fated counterpart. They were the type who finished each other’s thoughts. Our conversation was peppered with, “Hey Russ, what was the name of that… where were we when… where did I put my…” This year would mark 49 years of marriage. In the process of explaining the training that goes into a surgical career with Lynn, I felt a couple of taps on my shoulder. Russell, eager-eyed, was ready to ask me his list of questions. Born and raised in New England, he was a “left-brained” man with a résumé to prove it – surface craft electronics tech, mate galilee for the “Uncle Lem” fishing boat, and nuclear submariner, to name a few. He got through the standard background information quickly because really, he was more interested in whether or not I skied.
“You ski, or maybe snowboard? You ever been to Yawgoo? I ski there all the time. My daughter’s a ski instructor there. She’s quick. They say I shouldn’t ski cause of my Parkinson’s, but I don’t care, I love it.” Russell grinned and Lynn rolled her eyes.
We could have talked for hours, but the first appointment was approaching and I still had no clue where we were going. With a puzzled look on her face, Lynn handed me their schedule. It was studded with consultations from 9 a.m. to 5 p.m. – neurology, neurosurgery, speech and swallow therapy, physical therapy, and neurocognitive specialists.
Our first visit for the day was with Dr. Akbar, a neurologist who specializes in the medical and surgical management of movement disorders. He proceeded to outline our agenda – a series of interviews and physical and neurocognitive testing to determine Russell’s candidacy for DBS surgery. The process is thorough and requires consideration of medication optimization, cognitive function, surgical contraindications, and psychosocial and behavioral health. Lynn and I were ready with pen and paper in hand, while Russell was searching for ways to insert quick quips wherever he could. It wasn’t long before he found a way to work skiing into the conversation, too. Dr. Akbar glanced at him, “I don’t know if that’s the safest activity for you.” Russell smirked.
Our day pressed on. Through hallways, elevators and corridors, we met with each specialist. With each meeting, I learned more about Parkinson’s and the Swansons. The reduced arm swings were apparent from room-to-room, but the cogwheel rigidity and micrographia were more subtle signs. It was Russell’s mission to make each doctor laugh before the visit was over, and he always succeeded. Lynn continued to roll her eyes with an endearing yearn for him to take this more seriously. “I really hope he can get the surgery,” she repeated to me between visits. It was his pulmonologist who first noticed the shuffling gait, but the shaking came later. After being diagnosed in 2014, he joined a boxing gym with a non-contact boxing based fitness curriculum designed to help mitigate some of the motor and mood-related symptoms of Parkinson’s. That was where he first heard about DBS and how it could improve some of the motor complications of Parkinson’s, like the hand shaking. “I can’t stand the hand shaking,” Russell said. It wasn’t long before he called for an evaluation.
The final deliberation took place around a table that never seemed to end. Doctors, researchers, and therapists discussed each case of the day, and I sat on the side waiting to hear about Russell. There was a unanimous smile when Dr. Akbar said his name. I called the Swansons moments after the meeting ended to tell them the good news. He made the cut.
…
It was a late night in May. A floor nurse saw me standing outside one of the neurosurgery recovery rooms. It was late so she asked me if I was family. I said no, but hesitated. I asked the nurse how everything went, but she couldn’t tell me more than that it went well and that he was okay. I turned with a sigh of relief.
Ten months out from Russell’s surgery, I accepted an invitation to visit him and Lynn in their cabin placed deep in the middle of the woods. We sat in their living room, and everything was still, both time and his hands. I asked if he was scared at any point. “Me? No, nothing makes me nervous!” Lynn shook her head. “I was! I was on pins and needles,” she said. DBS gave Russell back some of the things we take for granted – writing, brushing teeth, using a fork and spoon.
For me, DBS gave me a new friend to call in the car. It isn’t often you get the time in medical school to form a relationship with the patients you meet, given the brevity and heavy workload of our clinical rotations. Taking the fifteen-minute drive home from clinic to call someone in my trusted circle of “favorites” is a special activity that keeps me grounded and motivated to continue the journey of medicine. Having Russell and Lynn on the other end of these phone calls gave me a new vantage point. Patients see and hear things differently than physicians, even the things that seem small or simple. To sit with the Swansons on the other side of the table, to feel with the Swansons, taught me more than I could tell or be told.
Before leaving the cabin, I asked Russell what his plans are moving forward. With an earnest smile he replied, “Nothing, just to keep skiing.”