By Karen Hales, Neurology Solutions Contributing Writer
Each month, Neurology Solutions Physical Therapist Kara Daugherty leads a Deep Brain Stimulation (DBS) support group for patients considering or undergoing DBS, an advanced surgery used in the treatment of PD and other movement disorders.
Parkinson’s Disease is one of the most common movement disorders, and it primarily affects older people. For many, movement disorders can be managed with medication and other therapies, including physical therapy and occupational therapy. As the disease progresses and tremors and other involuntary movements become more prevalent, side effects can become more severe and medications less effective in treating symptoms.
“DBS is one of the best-kept secrets, and I want that not to be the case because I have seen all the remarkable things that it can do.”
One of the more recent and effective treatments of PD is Deep Brain Stimulation, a therapy in which electrodes are surgically implanted into the brain and connected to a small electrical stimulator device that is implanted in the chest. The stimulator can be programmed to deliver small electrical stimulus to affected areas of the brain, much the way a pacemaker does for treatment of heart arrhythmia.
Download the National Parkinson Foundation’s Guide to Deep Brain Stimulation Therapy.
DBS surgery often helps significantly reduce tremors in patients with essential tremor as well as tremors and other symptoms of PD and Dystonia. Besides decreasing tremors, rigidity, and slowness of movements, DBS can reduce the need for medications, which is helpful since many of these drugs cause side effects such as involuntary movement. In one study, 87% of the individuals who had undergone DBS showed improvement in motor control within one year after surgery.
DBS Support Group Addresses Misconceptions, Sets Expectations
Each month, individuals who have undergone DBS and those who are considering the surgery meet for a DBS Support Group sponsored by the Capital Area Parkinson’s Society. The support group meets at 2 p.m. the third Friday of the month at Neurology Solutions Movement Disorders Center, 12345 North Lamar Blvd., Suite 260, Austin, TX.
Kara Daugherty, PT, a CAPS Board Member and physical therapist specializing in Parkinson’s Disease (PD), is co-proctor of the group. Daugherty said the support group allows individuals to share their stories, answer questions and receive thoughtful advice and first-hand accounts on what the treatment entails, what the potential outcomes are and what realistic expectations should be. The DBS support group is open to anyone at any stage of consideration of this treatment option.
Daugherty says one common misconception about DBS is that it should be used as a “last resort” and encourages patients to consider DBS sooner than later. According to a two-year clinical trial, EARLYSTIM, DBS can improve quality of life and social functioning in patients in early stages of Parkinson’s Disease, “when motor complications have just developed and before patients are significantly affected in their social and occupational functioning.”
Daugherty adds, “There is a therapeutic window when your body is still strong and you are vibrant. You don’t want to wait until you can’t move before you consider this surgery. DBS is a helper – an adjunct to medication therapy.”
There is research suggesting that DBS also may slow the progression of Parkinson’s Disease. According to a 2014 report in Neurology Reviews, animal studies suggest that DBS of the subthalamic nucleus protects “against the progressive loss of nigral cells” associated with Parkinson’s disease. As a result of these findings, researchers are planning a phase II study to evaluate whether DBS offers neuroprotection in humans.
Besides potentially slowing progression of the disease, Daugherty said the deep brain stimulator can provide a steady dose of electrical medication that is helpful with managing the on-cycling and off-cycling, or “peaks and valleys,” of oral medication, when medication starts to wear off and the next dose has not started to manage symptoms.
Another misconception about DBS is that it will return the patient to their state prior to becoming afflicted with PD, Daugherty said. “People think they are going to get off all their meds, and are going to be like they were before Parkinson’s,” she said. “(DBS) is not curing you, it’s not taking away all of your symptoms. The goal is to make you more stable in your medication regiment so you aren’t having the off-cycling, and that roller coaster ride of the medications wearing off.”
Unfortunately, DBS does not put the brakes on PD: DBS helps medication-responsive symptoms (dopamine responsive), but as the disease progresses and the symptoms are less responsive so, too, is DBS.
Still, however, the impact can be significant: “Theoretically, DBS can rewind the individual’s symptoms by four to seven years,” she said.
DBS Therapy Process & Programming
The process for undergoing DBS successfully can be quite involved. First, there is an evaluation to determine whether you are a candidate for the therapy. Some criteria include high cognitive functioning, whether you respond well to medication, and access to a support system to ensure proper follow up and ongoing medical assessment.
Click here to complete Questionnaire “Are You A Candidate for DBS?”
Patients also go through a fairly extensive period of DBS programming to achieve the best results in managing symptoms. Daughtery said patients will undergo weekly visits for 12 to 15 weeks for initial programming, followed by periodic visits to adjust the system and ensure the settings are optimized.
“It’s a process. It takes a long time–longer for some people than others,” Daugherty said.
“It may be four to six months before you feel like you have more control and feel like you are back to yourself.”
Sharing Your Journey
The DBS Support Group is for patients at all stages of the DBS process.
“We encourage patients to go to the DBS Support Group to learn about DBS before they get surgery. They see others who have gone through it, they get to know each other, and they come back and we get to see how they are doing after the surgery,” Daugherty said. “It gives them a chance to talk about their journey in a supportive environment.”
Then there are the success stories. The doctors doing “High Fives” in the operating room. The DBS Support Group member who turns his stimulator off to show how his apparent physical ease can morph back into severe tremor and Dystonia, with the inability to tap his fingers or place his foot on the floor. The patient who suffered from “freezing” prior to DBS surgery who underwent her first programming session while seated in a wheelchair then, afterward, ran down the hallway, jumped up and clicked her heels together.
“DBS is one of the best-kept secrets, and I want that not to be the case because I have seen all the remarkable things that it can do,” said Daugherty.
Comment and share below, and join Neurology Solutions Movement Disorders Center’s e-mail list to stay up to date on the latest in treatments, how to manage stress and maintain quality of life while battling illness, and tips for staying healthy.