A retired engineer, Ray Fulford first noticed the impact of tremor on his ability to write. His right hand shook so bad that he couldn’t make notes and had trouble even signing documents. “It started deteriorating to the point where I couldn’t even sign my name, because I’m right-handed,” says the 75-year-old who lives in Carrollton, Georgia.
Fullford was diagnosed with the neurodegenerative disorder Parkinson’s disease in 2014. The progressive disease has affected him in a number of ways. He says his memory has begun to fade a bit; his short-term memory comes and goes. Because of the disorder, though he’s able to talk about his experience clearly, it takes work for him to carry on with a conversation, and his speech isn’t as “durable” as it once was. “When I get through talking to you, I’ll be dog tired;” and it’s difficult for him to continue with a thought or line of discussion. “I lose train of thought,” he says. But the Parkinsonian symptom that’s most impacted him, outwardly so — and a hallmark of the disease — is tremor.
Besides losing his ability to write — something that was important for an “old-school” guy who prefers jotting notes sometimes to typing on a keyboard — it undermined his ability to use a computer. “It got to the point on the computer I couldn’t push the right key. I touched the right key and then I touched two wrong keys — [my right hand] was just bouncing all over the place.” The shaking affected him in many other ways as well. “I couldn’t eat with my right hand. I couldn’t drink with my right hand. So I had to do left-handed what I could,” he says. “Then I lost the ability to shave and brush my teeth with my right hand. My wife, of course, stepped in to help me with the shaving, and I learned to brush my teeth with my left hand.” And it’s severely limited him socially. “It made me similar to a recluse because I couldn’t get out amongst my friends.”
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Fulford tried medication called carbidopa-levodopa, but the side effects he experienced were more than he could bear. “It made me really sick,” he says. So he decided to undergo a surgical procedure that’s increasingly being considered not only as a secondary option for advanced Parkinson’s disease, but sometimes earlier in the progression of the disease to control symptoms like tremor: deep brain stimulation. The surgery’s not a cure — none currently exists for Parkinson’s — and it comes with risks, from infection to bleeding up to a brain hemorrhage or stroke. Yet, DBS has dramatically improved quality of life for many with the progressive disease.
The procedure involves implanting an electrode, or a thin insulated wire, to deliver electrical impulses to a certain part of the brain, typically the subthalamic nucleus, globus pallidus or the thalamus. The impulses come from a device sometimes referred to as a “brain pacemaker” — implanted under the skin usually near the patient’s collar bone. The electrical impulses control motor symptoms from Parkinson’s ranging from tremor to slowness or stiffness of movement to walking problems, by blocking abnormal electrical signals in the brain.
Since being approved by the Food and Drug Administration to treat movement disorders in 1997, DBS has gained steam as a tool to treat Parkinson’s symptoms. Though medication is still the primary means for controlling motor symptoms, the procedure — at least for some patients — is a growing part of the conversation. “It’s actually been quite successful, and I think just the overall comfort that people have in the field with using that as even a first-line option [for] patients with Parkinson’s disease has been a remarkable sort of change from 20 years ago,” says Dr. Kareem Zaghloul, a neurosurgeon and investigator at the National Institute of Neurological Disorders and Stroke.
“Initially there was some reticence to recommend DBS surgery earlier in the course of the disease, because it is a surgery and there’s risks that are involved, and you have other options that you can try — like these medications,” Zaghloul says. “But I think with time it’s becoming more accepted and generally more prescribed to do DBS surgery or even consider DBS surgery at an earlier time point.”
Traditionally, the typically three- to six-hour procedure has been performed with local anesthesia — while the patient is awake. And the prospect of having brain surgery with one’s eyes wide open has scared off some patients. It’s still commonly done this way today so that the neurosurgeon or electrophysiologist can communicate with the patient during the procedure when stimulating parts of the brain — and determining the placement of an electrode, or lead — to gauge the impact, for example, on tremor. The stimulations are recorded in the operating room — what’s called microelectrode recordings — to provide more information to guide the procedure.
“Not a lot of people like going to the dentist; and now you’re asking a patient to be awake in the OR while we’re performing brain surgery,” says John T. Gale, an assistant professor of neurosurgery at Emory University School of Medicine in Atlanta, and an electrophysiologist who maps brain targets during DBS procedures. “So that can have some level of anxiety associated with it.”
Some medical centers and specialists now also do procedures while patients are asleep, under general anesthesia, using imaging technology to map out the brain in advance of the surgery. Initial research suggests asleep surgery results at least match (and may in some cases improve upon) results of awake surgery in controlling motor symptoms in Parkinson’s disease, and should be considered an option for patients who are candidates for the procedure.
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Patients who go to Emory University Hospital for DBS can have the procedure done while awake or asleep. Though others would prefer to be under for the procedure, sometimes patients want to be awake when having the implant done, Gale says. “We do give patients options.”
DBS treatment doesn’t address other disabling symptoms of Parkinson’s like cognitive impairment and can actually make cognitive symptoms worse, so it’s not generally used if a person has signs of dementia, according to the NIH. “It doesn’t help with balance or freezing of gait very well,” says Dr. Jill Ostrem, professor of neurology at the University of California–San Francisco, and medical director and division chief for the UCSF Movement Disorders and Neuromodulation Center. And DBS doesn’t address speech or swallowing problems related to Parkinson’s.
Still, it can have a profound effect on some motor symptoms of Parkinson’s disease. “It can be incredibly effective in treating tremor, in treating rigidity, and some aspects of bradykinesia, or slowness of movement,” Ostrem says. Where medication may fall short in consistently alleviating motor symptoms, continuous electrical impulses from DBS can improve those throughout the day.
It also seems to be an option that lasts. “It turns out in the longest studies we have with DBS, the symptomatic control you get from stimulation actually stays pretty constant over the course of at least 10 to 15 years — as long as we’ve looked,” Zaghloul says. “So it seems like it’s a pretty reliable treatment.”
For Fulford, who had the procedure done in November of last year, the impact was significant. Just as his deteriorating ability to write was the first casualty of his tremor, improvement in this area was one of the first things he noticed after having the procedure done. “I just grinned when I could write my name again.” He does it slowly. “It’s not as fast as it used to be. But I can write my name. I can sign my name and make a few notes along the way in a meeting.”
It’s helped in other areas as well. “I can hold my fork — I can eat with a fork with my right hand. I was eating with a spoon with my left hand,” he says. “I can handle my glass that I drink out of, my coffee cup with my right hand, where I used to do it with my left hand.”
Such quality of life improvements can drastically improve a person’s outlook, experts say — even though they don’t change the course of the disease. “It’s given me a lot more confidence,” Fulford says.
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He knows it’s not a cure, but he’s resolute about controlling his symptoms as best as he can. The DBS procedure he underwent placed an electrode on the left side of his brain to control symptoms on the right side of his body, quelling the tremor in his right hand. Now with tremor getting worse in his left hand, he’s leaning toward having an electrode placed on the right side of his brain as well to address that.
“I wish I didn’t have it,” he says of Parkinson’s. “But I got it, and I’ll deal with it.”
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When Might Deep Brain Stimulation Help With Parkinson’s Disease? originally appeared on usnews.com
