Mike and Kathryn Whitt’s story is one of determination, resilience, and patient self-advocacy. But foremost, the Whitts hope to convey that deep brain stimulation (DBS) for patients with Parkinson’s disease is far from a last-ditch option it used to be.
Their story begins in fall 2013, shortly after catastrophic flooding tore through Longmont. Their home stayed dry; that of their best friends was destroyed. Baby Annabelle had just joined older brothers Daniel, 5, and Nathaniel, 3. Mike was a 35-year-old Ball Aerospace electrical and computer engineer who developed test equipment for space instruments.
One day, he held his baby daughter and instinctively patted her gently on the back. He realized he couldn’t do so with any sense of rhythm. He mentioned it to Kathryn, a schoolteacher on a frazzled hiatus with three young children.
Kathryn remembers thinking: “Our friends lost their house. We have a baby, and we can’t sleep. Move on!”
But not long after that, Mike told her he was having a hard time typing with that same right hand. Kathryn agreed that something was wrong. So started a medical journey.
‘Something is wrong:’ Could it be rare ‘young-onset’ Parkinson’s?
Mike’s primary-care physician prescribed physical therapy. His fingers stayed uncooperative. Meanwhile, he found himself so exhausted at work that he was taking naps in his car over lunch. Mike had, in his dozen years at Ball Aerospace in Boulder, worked his share of 100-hour weeks in a business known for hard deadlines dictated by celestial mechanics and fixed launch windows. Now he was struggling to plow through half that span despite Kathryn doing the heavy lifting with the newborn and the boys. It got to the point that Mike was wary of driving with the kids in the car for fear he would nod off.
“That’s when I said, ‘That’s it,’” Kathryn recalled. “Something is wrong and we’re not going to stop until we have an answer.”
The hand therapist gave way to a rheumatologist, and, ultimately, a neurologist. By then nearly three years had gone by. Mike existed in what he described as “a fog,” and while still able to do his work, was completely depleted by the time he got back to Longmont.
“He wasn’t connecting with anyone at home. He was too tired to really laugh or joke or play, and I was going crazy. I had to know what’s going on,” Kathryn said.
The Whitts read up and reached out. Could Mike have some weird form of Parkinson’s disease? A neurologist said no. Mike was too young, first of all: young-onset Parkinson’s disease affects just 2% to 10% of the roughly 1 million people with Parkinson’s disease in the United States – and “young,” in this case, applies to those under age 50. A second neurologist agreed with the first, but, when Kathryn insisted, referred Mike to UCHealth University of Colorado Hospital (UCH) on the Anschutz Medical Campus.
Deep brain stimulation or DBS providing new hope and help for Parkinson’s patients
At University of Colorado Hospital, the Whitts met with UCHealth movement disorder neurologists, who quickly diagnosed Mike with Parkinson’s disease. Annabelle, the baby he couldn’t quite pat three years prior, had started preschool that morning.
Mike, now 38, started on what would become a changing regimen of medications that eventually added up to as many as 40 pills a day.
“You name it, I was probably on it for Parkinson’s,” he said.
The medications never quite took.
“Parkinson’s is a ‘snowflake disease’ – everybody’s different,” Kathryn said. “A lot of the meds that worked for other people just did not for Mike.”
As Mike continued to have challenges with medications, he ultimately was referred to UCHealth and University of Colorado School of Medicine neurologist Dr. Drew Kern. He recognized that Mike metabolized the drugs quickly, shifting from what Parkinson’s patients describe as “on” (functioning closer to “normal”) and “off” (dealing with tremors, fatigue, sleeplessness, and other Parkinson’s symptoms) quickly and abruptly. After much discussion, together they determined that Mike should consider deep brain stimulation or DBS.
DBS involves implanting electrodes, typically one on either side of the brain, at targeted locations deep in the brain (favored Parkinson’s targets include the subthalamic nucleus and the globus pallidus interna). A connection wire is then run under the scalp behind the ear to a battery implanted below the collarbone.
The resulting changes in brain signaling have long been known to diminish Parkinson’s-related tremor, rigidity (stiffness), and slowed movement. More recently, neurologists and patients have reported that DBS improved a slew of nonmotor Parkinson’s symptoms, including fatigue, mood, hallucinations, perception, and urinary and sexual complications.
What was mainly the domain of long-term patients with late-stage disease is now routinely considered for younger patients. The U.S. Food and Drug Administration approvals have borne that out: first approved for Parkinson’s tremor in 1997, that approval expanded to encompass advanced Parkinson’s symptoms in 2002 and, in 2016, to those who have had the disease for at least four years and have motor symptoms that medication can’t adequately control.
While DBS can do a lot, it’s not a Parkinson’s cure, Kern says, nor does it seem to help with Parkinson’s-related attention and memory problems or gastrointestinal symptoms such as constipation.
But taken together, Kern says, “quality of life can be improved by 30 to 40%, and that’s what really matters.”
DBS valuable for Parkinson’s before patients ‘go over a cliff’
By 2018, the medications weren’t helping. Mike experienced sweeping “on’’ and “off” swings – both of which bode well for DBS success, Kern says. Just as importantly, although Mike had experienced symptoms for five years now, he was still early in the course of disease.
“We no longer think about DBS for someone who’s already over the cliff and holding on to a blade of grass,” Kern said. “We want to implement this before we’ve approached the cliff.”
In less metaphorical terms, Kern generally suggests DBS for Parkinson’s patients before they’ve stressed marriages, lost jobs, or missed time with children and grandchildren that they can’t get back.
Mike was missing time with his children. Even with the medications, what were once routine demands at work left him exhausted at home. The seesawing from those meds left him more or less constantly vomiting or falling asleep. Playing with his kids may as well have been marching up a Fourteener.
When Kern suggested DBS, the Whitts were enthusiastic – but surprised.
“For the longest time, we knew it was an option,” Mike said. “But I thought it was a last resort, which isn’t true.”
Awake during DBS surgery: ‘I could feel my body just relax’
In mid-2018, he embarked on a process of vetting and preparation for the DBS procedure. Patients must not only be good candidates from a medical perspective, but they also must understand what DBS can and can’t do as well as the procedure’s risks and benefits. Other considerations include having good caregiver support, no overt dementia (which DBS can make worse) and stable mental health.
The Whitts became well acquainted with the UCHealth DBS team that includes four movement-disorder neurologists, two neurosurgeons, four neuropsychologists, two neuroradiologists, a physical medicine and rehabilitation physician, physical therapists, speech therapists, occupational therapists, and, unique to UCH, a neuropalliative care team led by Dr. Christina Vaughan. Vaughan talks patients and families through the changes they can expect through the DBS experience, listens to their concerns, and helps them prepare for what is, for many, a new phase of existence, Kern says. The entire DBS team discusses all patients undergoing evaluation for DBS on a weekly basis, assessing if a patient is a good candidate and determining optimal electrode targets in the brain.
Mike’s DBS surgery was in fact three procedures spaced about a month apart in November and December 2018 and in January 2019. The first two implanted electrodes on the right and left sides of his brain; the third placed the battery under the skin just below the collarbone. For all three, a movement-disorder neurologist, a neurophysiologist, and a functional stereotactic fellowship-trained neurosurgeon collaborated in planning and performing the first two procedures.
In Mike’s case, the subthalamic nucleus was the ideal target for the DBS electrodes. Placing those electrodes takes a combination of extraordinary technology, skill, and experience. Patients are generally awake during the procedure: their movements and responses improve targeting and help avoid adverse effects. UCH also does DBS under anesthesia using an MRI-assisted system called ClearPoint that combines real-time MRI guidance in the implantation of DBS electrodes.
Being awake was fascinating, Mike says. Kern and colleagues had him move his limbs as the surgical team listened and watched portions of Mike’s brain respond to those movements. Once the electrode was placed, Mike noticed a difference right there on the table.
“They turned it on and I could feel my body just relax. It was the weirdest thing,” he said.
The last phase of a DBS case involves optimizing the current flowing to the electrodes. That’s a multi-step process in which Kern established a baseline range in which Mike can then adjust.
It’s been nearly two years since that first electrode went in. Many DBS patients drop half or two-thirds of their Parkinson’s medications; Mike is off them all.
Annabelle, now 7, sees the difference in her dad.
“She talks a lot about the surgery,” Kathryn said. “She says, ‘Now daddy doesn’t throw up and sleep all the time. Daddy can play now.’”
Her brothers Daniel, 12, and Nathaniel, 10, see the difference, too. Mike now goes on bike rides and kicks a soccer ball around with the kids, activities that would have been “inconceivable” a few years ago, as Kathryn described it.
“It’s been life-changing,” she said. “We’re in the really formative years with our kids. It really matters that they get to have their dad back right now.”
DBS isn’t a Parkinson’s cure, Mike knows, “but it allows me to do the things that I want to do with my life.”
Cure or not, DBS couldn’t have come sooner.
“Honestly it was a straight-up miracle for us,” Kathryn said. “It has enabled him to experience joy in life.”
The space engineer put it in familiar terms.
“It’s not rocket science,” Mike said, “but it is brain surgery.”