“I remember getting kind of emotional, I had to draw some spirals, which I hadn’t been able to do. And I could do it.”
Jim McDevitt was 20 when he was diagnosed with an essential tremor, a type of body tremor that has no known cause. Although, it tends to run in families. He was told the tremor would worsen as he aged, and there was nothing that could be done about it. So, Jim accepted his fate.
Within the last five years, Jim, now 64, says his tremor had become far more severe and was disrupting virtually every aspect of his life. Even with an expensive electric razor, shaving took at least a half-hour. His handwriting was completely illegible. To spare himself from frustration and embarrassment, he stopped trying to fill out the paperwork that accompanied every doctor’s appointment. And going out to eat was out of the question because eating was a chore.
And yet, Jim was prepared to continue living like this. His course changed only recently when he became aware of a potential treatment called deep brain stimulation. Shortly after, his daughter suggested he see a Penn Medicine neurosurgeon on the advice of a friend with familiarity with the movement disorders program.
A couple days later, Jim was sitting across from Iahn Cajigas, MD, PhD, at the Penn Medicine Lancaster General Health Neuroscience Institute, where Dr. Cajigas had just begun seeing patients once a month.
“I worked for many years in and around Lancaster,” Jim says. “Plus, it’s much closer to my home than Philadelphia, so I felt very comfortable traveling there to see Dr. Cajigas.”
There are two ways to assess the severity of a tremor. One is by simply asking the patient to rate their level of impairment. Jim gave himself a 50 on a scale of 100. Dr. Cajigas gave him a 75. “It was quite dramatic,” he says.
The other is by scoring the patient’s ability to accomplish various tasks, including tracing small and large spirals, talking, eating, and dressing, using the Clinical Rating Scale for Tremor. It’s also used to score the tremor’s prominence in the patient’s arms, head, and voice.
Jim tallied a total score of 70 out of a possible 144, which Dr. Cajigas describes as “quite high.” The severity of Jim’s tremor and the high degree of impairment it was causing him made Jim a candidate for surgical intervention.
Jim was thrilled to hear his condition was treatable after all. He didn’t want to spend another day living like this if he didn’t have to. But his daughter’s wedding was only a couple months away. It would be tight, Dr. Cajigas told him, but he was confident he could have him ready in time.
Just like that, the shaking was gone
There were a couple options for Jim’s treatment, though deep brain stimulation is “considered the standard of care in the surgical management of essential tremor,” Dr. Cajigas says.
Approved by the Food and Drug Administration in 1997 to treat essential tremor and in 2002 for the treatment of Parkinson’s disease, it involves implanting electrodes in targeted areas of the brain. The electrodes generate electrical impulses that prevent tremors from occurring. This stimulation is controlled by a programmable generator that’s placed under the skin in the upper chest. Wires connecting the electrodes and generator run under the skin of the head, neck, and shoulder.
Jim’s generator is powered by a rechargeable battery that can last up to 15 years on two 40-minute charges per week. Non-rechargeable options are also available. Jim opted for the rechargeable battery because it doesn’t need to be replaced as frequently as the non-rechargeable ones do.
Deep brain stimulation is not a cure for essential tremor, but it does completely stop them from occurring. It’s Dr. Cajigas’s preferred method of treatment in cases like Jim’s because it’s the most versatile of the options and allows for the simultaneous treatment of both hands. Should Jim’s tremors ever return or worsen despite the therapy, the level of stimulation can be increased by tweaking the generator’s program. He likens it to a pacemaker for the brain.
In the middle of the operation, Jim was awakened so that Dr. Cajigas could ensure the system was functioning properly. And then he tested Jim’s tolerance at higher levels of stimulation, should they ever be needed. Dr. Cajigas describes it as his “therapeutic window.”
For Jim, the experience was surreal.
“I remember getting kind of emotional,” he says. “They gave me a clipboard and I had to draw some spirals, which I hadn’t been able to do, and write my name both right-handed and left-handed. And I could do it.”
He was also given a cup and asked to pretend like he was drinking from it. His hand didn’t shake when he tried.
Jim observed everything with awe. He allowed himself to believe he was 19 again, his last point of reference for a life without the constant shaking.
‘It was pretty overwhelming’
Jim underwent his surgery at Pennsylvania Hospital in Philadelphia on April 28, two weeks before his daughter’s wedding. Dr. Cajigas says he generally tells his patients who undergo deep brain stimulation that it will take about four weeks to feel back to normal. Jim, he says, “recovered really well.”
Typically, a neurologist will program the DBS device a few weeks after surgery to allow for some healing. “I programmed him myself immediately after the surgery to try to get him some relief,” Dr. Cajigas says. ”It’s not the usual by any means, but I’m adaptable to people’s life circumstances.”
The operation was on a Friday. Dr. Cajigas checked on Jim the next morning and adjusted his generator. Jim was home by that evening. A month later, he followed up with Gabriel Hou, MD, PhD, FAAN, a neurologist at the Penn Medicine Lancaster General Health Neuroscience Institute. He also saw Dr. Cajigas again. On both occasions, slight adjustments were made to his DBS device’s programming. Jim says he will continue to see Dr. Hou on a regular basis for routine checkups.
Come the day of the wedding, his attention was fully focused on his daughter and the significance of the occasion, which had grown exponentially with the new state of his life.
At the memory of delivering his toast tremor-free, Jim begins to cry.
“My family knew, obviously, what was going on with me, and they understood,” he says. “But I don’t think a whole lot of the people there knew what just transpired with me. I certainly didn’t want the day to become about me, so I kept my mouth shut and tried to do the best I could. But it was pretty overwhelming.”
Relishing the mundane
These days, Jim relishes the mundane, like filling up the dog’s water bowl and the Keurig reservoir without splashing water everywhere and making himself a grilled portobello mushroom sandwich for lunch.
“It’s a big deal,” he says. “But if I tell anybody, they laugh at me because these are very small things to them.”
After moving through life with constant, increasing resistance for nearly 45 years, Jim is still coming to grips with his new reality practically and emotionally. On his days off, he uses a tool to teach himself how to write again. Since his surgery, he feels like he’s thinking faster than he can express himself, but he’s been noticing the discrepancy is shrinking.
More than anything, he’s struggling with the fact that he didn’t seek help sooner.
“I was really dumb for not doing my homework and staying on top of things,” Jim says. “To tell you the truth, I thought it was going to be a temporary thing and then it was going to go away.”
Dr. Cajigas says Jim is hardly alone in this regard.
“Unfortunately, a lot of patients with tremor think they’re stuck with it for life,” he says. “We can do something to return some quality of life. The neuromodulation devices are opening up new doors for us to interact with the brain. These therapies interrupt the signals that cause the abnormal rhythms in the brain that lead to tremors or the slowness of movement in Parkinson’s.”
Movement disorders care requires a team working together to come up with the best solutions for each patient. Penn’s program is one of the busiest in the country and combines the expertise of movement disorder neurologists, neurosurgeons, neuropsychologists, nurses and nurse practitioners, social workers, and speech, occupational, and physical therapists.
For his part, Jim has been trying to make sure those in his circle are aware of their options.
“I’ve noticed other people throughout my life who have tremors,” he says. “I tell them, ‘Listen, you’re in the boat I was in. You don’t have to live like this.’ And then I tell them all about Dr. Cajigas, and how he took such great care of me and my wife.”