New technology helps patients cope with tremors through smartphone app

You can barely see the grooves on Lynn Shaw’s scalp. But you can feel them, she says. With hands that once trembled too much to write, she traces them — two wires, just beneath the skin, running from the top of her head and down her neck, to a cardbox-shaped protrusion in her chest. A touch on the iPad and the wires respond accordingly, sending pulses of electricity to her brain. Her hands are steady, and she can’t feel a thing.

Shaw is the recipient of a wireless deep brain stimulation system — a battery-powered device that sends small electrical impulses to the brain to combat the motor symptoms of Parkinson’s disease or other conditions. Though deep brain stimulation has been used as a treatment for Parkinson’s or Benign Essential Tremor (BET) for over two decades, the technology that allows Shaw to steady her hands through the touch of a smartphone is relatively new, available for just over a year in the Flathead.

Shaw, an 18-year resident of Kalispell, received her Abbott’s Infinity Deep Brain Stimulation system this March after years of deepening frustration over her tremors.

She thinks she’s always had some level of benign essential tremor, a neurological disorder that causes involuntary and rhythmic shaking, especially in the hands.

Even when she was younger, “I couldn’t take a picture because it was always shaky,” she said.

As the years went by, her shaking hands morphed from an annoyance to a roadblock. Always a kinetic learner — she worked on trains around Portland, Oregon in the early 1970s — the tremors blocked her preferred hands-on learning process (“welding wasn’t fun,” she joked).

Adjustments were made to accommodate the shaking. “I was embarrassed to go out to dinner,” so they ordered less peas or soup, and more finger foods. Even so, she said, “I sat on my hands most of the time.”

When her handwriting became too difficult to read, Shaw gave up her work preparing taxes in Kalispell, and resigned herself to living with the shaking. Then her primary care physician told her to visit Dr. Joseph Sramek of the Neuroscience & Spine Institute for Kalispell Regional Healthcare.

Sramek specializes in functional neurosurgery, a division of neuroscience that focuses on treatments for movement-related disorders such as Parkinson’s or BET, pain and epilepsy. He and his staff are, as far as he’s aware, one of two in Montana who perform the implantation of deep brain stimulation systems such as Shaw’s.

Sramek’s office focuses in particular on deep brain stimulation for Parkinson’s or BET patients. Though Parkinson’s disease can present a host of symptoms from slurred speech to muscle rigidity, deep brain stimulation treats motor control symptoms — most frequently, the tremors shared with BET patients such as Shaw. “In both cases, essentially what we’re trying to do with deep brain stimulation is to take abnormal brain circuitry and stimulate it to a point where it normalizes that circuitry, to some extent,” said Sramek.

Though deep brain stimulation has been available for years, recent developments in the technology have made the process more accurate, flexible and, from an outside perspective, futuristic.

Shaw’s Infinity system, for one, has what’s called a multi-directional lead, which helps to localize the electric pulse. “When you’re stimulating a target of the brain, you’re really targeting a very small area, or a nucleus, in the brain,” said Sramek.

“The outcomes are really dependent on how accurately you place that electrode...Even just the difference of a millimeter or so can have a difference in the outcome.”

Misplacing an electrode not only mitigates the effectiveness of the stimulation, but could cause unwanted, though impermanent, side effects such as the slurring of speech.

A multi-directional lead, however “allows you to shape that current into three different directions,” like putting a magnet by an electrical sphere.

“Our goal with every surgery is always to make it as accurate of a placement as possible. But, if it’s off that fraction of a millimeter or a millimeter, we can still get that good programming because of that directionality.”

Additionally, the Infinity’s wireless technology allows for adjustments to be made to the intensity and frequency of the stimulation in real time, as the patient is talking or walking, and on their phone or iPad.

In the past, once the surgery to implant the device and battery placement surgery were complete, adjusting the device’s currents formed a lengthy period of trial and error — walk, sit, adjust, try again, repeat. “Now, you can literally make changes as they’re walking, and you’re watching them go back and forth,” said Sramek. “It makes it so that there’s more of a real-time response when you’re doing adjustments.”

Deep brain stimulation is ideal for Parkinson’s or BET patients who no longer respond to medication and whose tremors are severely limiting and socially isolating — patients like Shaw.

Before her surgery, she said it was stressful to go out to eat or be in public because “people are constantly looking at you.”

Now, she said the decrease in her tremors is remarkable enough that “it doesn’t bother me to approach a stranger anymore. It’s freeing.” She can draw symmetrical shapes again, eat with a spoon.

When she saw her two daughters recently for the first time since the procedure, they exclaimed at the steadiness of her hands. “They said ‘Mom, you’re not shaking, look at you!’ They were just amazed.”

The immediate impact of the treatment is why, according to Sramek, “it’s one of my favorite surgeries that I do.”

“The patients tend to do very well, they tend to be extremely grateful. You can see the benefits really quickly, and it really does improve their quality of life.”

Though nationwide, BET patients such as Shaw outnumber Parkinson’s patients at least four to one, Sramek said that he more commonly sees Parkinson’s patients, in part because many BET patients lack awareness of the treatment. Even then, deep brain stimulation isn’t available in many places; before Sramek arrived five years ago, he said, patients would have to travel to Billings, Spokane or Seattle for the procedure. “The mechanism for getting the word out that this is a viable treatment for essential tremor isn’t quite as robust as it is for Parkinson’s,” said Sramek.

This was the case for Shaw, who wasn’t aware a surgery for her tremors existed until recent years.

“I wish I had got it done when I was 40 or so, not waiting to get it done until 70-something,” she said. “I was wrong to think that there was nothing they could do.”

Hands resting calmly on her lap, she marveled at the wires, the smartphone controls, the imperceptible pulses in her brain. “You have no idea how much energy it takes to shake constantly. I have much more energy now. Life is good.”

Reporter Adrian Horton can be reached at 758-4439 or at ahorton@dailyinterlake.com