Programming takes time
A DBS clinician adjusts which contacts are active and the strength, pulse width and frequency of stimulation. The goal is to improve target symptoms while limiting side effects. Early visits may involve several adjustments, and changes may continue as Parkinson's changes.
Give a new setting the time your clinician recommends. Changing settings too often can make it difficult to understand what helped. Only use patient controls within the limits your team provides.
Track what changes, not every second
Useful notes are specific and connected to daily life. Record the time of medication, the DBS program if you can see it, the activity, what happened and how long it lasted.
| Less useful | More useful |
|---|---|
| “Bad morning.” | “At 9:15, 45 minutes after levodopa, right-hand tremor still made it hard to hold a mug.” |
| “Walking worse.” | “Froze three times while turning into the bathroom between 7 and 8 p.m.; no falls.” |
| “Speech off.” | “Family could not understand me at dinner after the setting change on Tuesday.” |
Short videos can sometimes show a symptom better than words. Ask your team whether videos are useful and how to share them securely.
Prepare for programming appointments
- Bring your patient programmer or controller and device identification card.
- Bring an up-to-date medication list and dosing times.
- Identify the two or three changes that matter most.
- Explain any falls, near-falls, speech changes, mood changes or new confusion.
- Ask what was changed, what side effects to watch for and when to follow up.
- Write down which program to use and whether you may adjust anything yourself.
Everyday device basics
Know the manufacturer and model of your implanted system and keep your identification card available. Check battery status as your team recommends. If your system is rechargeable, follow the charging routine given by your clinic and manufacturer.
Before MRI, surgery, dental procedures or other medical treatment, tell the healthcare team that you have DBS. MRI eligibility and required settings depend on the exact implanted components and conditions. Never assume that someone else's device rules apply to yours.
Use the official manual for your exact system and contact your DBS clinic or device manufacturer with device-specific questions.
When should you contact the DBS team?
Contact your team for loss of expected benefit, new stimulation-related symptoms, trouble charging or communicating with the device, an alert from the controller, a fall that may have damaged the system, or redness, swelling, pain or drainage along the hardware. Seek urgent help for sudden severe neurological symptoms, seizure, loss of consciousness or another emergency.