Before the evaluation
Write down what daily life looks like when medication is working well and when it is not. Bring specific examples of off time, dyskinesia, tremor, falls, freezing, sleep, mood, thinking, speech and swallowing. Your role is not to prove that DBS is needed. It is to help the team see the whole picture.
Make room for two honest answers
The person with Parkinson's and the care partner may have different hopes or fears. A strong DBS team should hear both without treating either person as the problem.
Turn hope into measurable goals
Ask which goals are likely, uncertain or unlikely to improve. DBS may reduce selected movement symptoms, but it does not remove Parkinson's or guarantee independence. Talk about what would count as a worthwhile result for both of you and what responsibilities may remain.
Plan for surgery and early recovery
Follow the center's instructions because procedures differ. Before surgery, confirm transportation, medication instructions, wound care, activity limits, emergency contacts and when programming begins. Ask what changes require an urgent call. Do not improvise medication or device changes unless the clinical team has told you how.
Programming can take time
The first setting is rarely the final setting. Keep expectations flexible while stimulation and medication are adjusted. Record changes with dates and context rather than changing several things at once. Ask who to call if symptoms worsen between visits and whether video or remote support is available.
What can be useful to observe
- Changes in on time, off time, tremor, stiffness or dyskinesia
- Walking, freezing, balance or falls
- Speech volume, clarity or swallowing
- Sleep, mood, anxiety, motivation or impulsive behaviour
- Thinking, confusion or unusual behaviour
- Device-controller or charging difficulties
Observation is information, not surveillance. Agree together on what will be tracked and how it will be discussed.
Protect your own capacity
Care partners can become the scheduler, driver, observer and emotional anchor. Ask family, friends or the center for specific help. If the plan depends on you attending every programming visit or managing charging, say what is and is not realistic before surgery.