5Before Surgery
People and families with Parkinson’ s think about DBS for different reasons and at different times. Soon after diagnosis, some want to understand all potential treatment options. Others dig deeper at the suggestion of a physician, fellow community member or loved one. Many seek detailed guidance as they seriously consider DBS, a few years or more into life with Parkinson’ s.
There’ s no right or wrong time to gather information, and it’ s never too early to start. You’ re taking a positive step to make the best decision for you. That can feel energizing. But it can also feel scary or confusing. When thinking about DBS, many say they feel hope and optimism for how it may help, sadness about disease progression or an understandable hesitation about brain surgery. These emotions are perfectly normal.
Explore and discuss feelings. Talk with your family, loved ones and support system. Get a second opinion from a movement disorder neurologist who specializes in DBS, if needed. Talk with a DBS surgeon. Draw on the experiences of those who’ ve had DBS. Ask lots of questions. Reflect on what you learn. Give yourself time, space and grace throughout the process.
What DBS Can and Can’ t Do
For many people, DBS is very effective for treating motor symptoms, such as tremor, slowness and stiffness. DBS also can lessen dyskinesia( involuntary movement), dystonia( muscle cramping) and wearing off( when medication stops working and symptoms return). It can smooth out the day and even out ups and downs, often with less medication.
DBS typically helps symptoms that levodopa helps. If levodopa eases a certain symptom, DBS is likely to ease that symptom, too. But where levodopa does not help, DBS is unlikely to help either.
DBS likely to help
+ Slowness
+ Stiffness
+ Tremor, including“ medication resistant tremor,” which is difficult or impossible to treat with levodopa and other drugs
+ Mild walking problems that improve with levodopa
+ Symptom fluctuations:“ on” when symptoms are controlled, alternating with“ off” when they aren’ t
+ Dyskinesia: involuntary, uncontrolled movement
DBS unlikely to help
+ Significant walking problems, especially those that do not improve with levodopa
+ Freezing of gait
+ Balance problems and / or falls
+ Speech or swallowing changes
+ Thinking or memory( cognitive) changes
+ Mood problems, such as depression, anxiety or apathy( lack of motivation)
+ Bowel, bladder or sexual function changes
+ Dystonia: muscle contraction