The two words describe a powerful, destructive force. For most of us, the lucky ones, they remain an abstraction. For Tino Flores, “Parkinson’s disease” and its subversive power are all too real.
Flores, 66, knows Parkinson’s intimately. For 12 years, he’s felt the disease steadily attack his ability to move, his muscle control, and his balance. Sitting on the couch in his Greeley home, he gestures toward the walker sitting nearby.
“I hate that walker,” he said. “But I need it.”
On the coffee table in front of him sit two bottles of pills. The medications help to control the symptoms of Parkinson’s, but they also can have powerful side effects, including grogginess and even hallucinations. Flores says at times he’s had to take more than 10 a day. “You feel like you’re in a haze,” he said.
He’s also waged a mental battle with Parkinson’s. “I used to have big arms and legs,” Flores said. “I can feel my body shrinking.” The words surprise his visitor, who on this mid-October morning sees a solidly built man. It’s easy to imagine him working in the meat-packing plant in Greeley, as he did before he enlisted in the Air Force National Guard and did basic training at age 33.
“I outran 18-year-olds,” he said. Flores went on to serve 25 years as a machinist and welder with the Wyoming Air National Guard in Cheyenne.
Now it’s hard for Flores not to think painfully about what he’s lost physically since his original Parkinson’s diagnosis in 2004 and slow decline leading up to his retirement in 2010.
“The disease takes away a lot that you don’t realize until years later,” he said. “When you sit and think about that stuff, it can bring you down.”
Stimulating the future
But Tino Flores has recovered a portion of the life that Parkinson’s robbed, thanks to three words that also are abstractions until you understand their transformative power: deep brain stimulation (DBS). The three words have helped Flores quite literally reshape his future.
Flores has had two DBS procedures at University of Colorado Hospital, both performed by neurosurgeon Aviva Abosch, MD, PhD, director of stereotactic and epilepsy surgery. Abosch implanted electrodes in the regions of the brain that control Flores’ movement and coordination. The electrodes are attached to a computerized neurotransmitter placed under the skin and a connected external programmable unit he wears next to his body. The neurotransmitter delivers electrical pulses at regular intervals to stimulate the targeted areas of the brain, helping to control his tremors and other symptoms.
The decision to have DBS is hardly an easy one. The procedure involves immobilizing the skull in a large cage for an MRI of the brain. The surgical team then drills holes in the skull, through which they thread and place the electrodes, working closely with a neurologist to pinpoint the most effective spots for stimulation. All the while the patient is sedated but awake and able to describe what he’s feeling and respond to movement requests.
Flores said Abosch didn’t mince words in describing the surgery and its potential benefits, as well as the risks. “She said I could die or that I might be crippled, and that there would be pain,” he said. “It was all up to me.” Flores thought of his steady physical deterioration that had made hiking, cycling, dancing and welding harder and harder to do. He opted for DBS.
“I was tired of living that way,” he said simply.
He had his first surgery in February 2014 on the right side of his brain. As Abosch had promised, there was plenty of pain – “I felt like someone had a foot on my head and was pulling threads to keep it tight,” he remembered. But after having the unit programmed, Flores was able to cut the number of meds he took in half and slowly began increasing his exercise, including walking and riding his bike.
“I got some freedom back right away,” he said. He later had a second DBS procedure on the left side, which helped to address cramping he said he experienced in his right toe and leg. “That one was a piece of cake,” Flores said.
Abosch said that DBS is able to “stop the Parkinson’s-related tremors in a way that medications can’t.” Patients must continue to take medications, but in decreasing the number, they also reduce the disabling side effects of the drugs, she said. They also must make regular clinic visits to fine-tune the unit’s programming and the patterns of electrical signals delivered to the brain.
“We try to find a ‘sweet spot,’ a balance between the meds the patient takes and the stimulation the brain receives,” Abosch said.
For Flores, the benefits of all this go well beyond the clinical. “He’s able to get out and around,” she added. “That means getting his life and his identity back.” That, in turn, helps to stave off depression, a frequent problem for Parkinson’s patients, Abosch added.
One sees important pieces of Flores’ identity in framed portraits of his grandchildren. “The Parkinson’s took time away from playing with them,” Flores said. “When I think about them and my kids, it makes it worth it to keep going.”
Shaping his destiny
The DBS procedures have also helped him direct his energy to creating striking works of art he forges from scrap metal with the welding tools and machinery he keeps in his garage. He uses discarded pieces of aluminum and bronze, tiny pistons from weed whackers, and other seemingly nondescript cast-offs as his materials. He fires, cuts and burnishes, summoning beauty from what was base.
He walks steadily from the garage back into the house, without the walker, pointing to some of the results of his craft: a pair of bison figures fused to the stem of a lamp; a large circular metal wall piece inset with the countenance of a Native American in headdress; an intricately cut tree with clouds of metal leaf clusters supported by a powerful trunk. Cut into the trunk, fittingly, is a tiny “T,” his artistic signature.
Without the DBS, his trembling hands wouldn’t have allowed him to produce this work. Nor would he have been able to use the bike that hangs from the ceiling of the garage. Now he can pedal again on short trips, regaining a longtime pleasure he’d lost to disease.
As Abosch points out, DBS is not a cure for Parkinson’s, and Flores knows he will battle it the rest of his life. As he sat on the couch talking he occasionally struggled with discomfort in his left leg. He must plan his day around windows of reprieve from symptoms granted by the DBS and the meds working in harmony. Periods of sleeplessness are a regular and unwelcome companion.
Short of a cure, there are improvements in clinicians’ ability to manage Parkinson’s on the horizon, Abosch said. For example, devices that monitor a patient’s brain and neurologic activity and store the information on cloud servers are now in development, she said. With this technology, providers could keep a much closer eye on DBS patients’ programming and make remote adjustments rather than bringing them into the clinic when their symptoms worsen.
“We’re getting closer on that,” Abosch said. “That’s the next big advance in Parkinson’s disease.”
For Tino Flores, the most important advances occur during the hours of relief from disease that Abosch and DBS have given him.
“I feel like now I have the freedom to do what I want,” he said. “I’m going to continue with a normal life.”
Click here for a video portrait from UCHealth of Tino Flores’s battle with Parkinson’s.