Talking to Your Doctor: Tips for Understanding and Communicating About DTDS
Navigating a diagnosis like DTDS can be challenging, especially when it comes to understanding medical terms and treatment options. Here are some tips to help you communicate effectively with your healthcare team:
Ask Questions: Don’t hesitate to ask your doctor to explain terms or concepts you don’t understand. It’s important that you feel confident in your understanding of your child’s condition and treatment plan. You might ask, “Can you explain what dystonia means for my child?” or “What are the possible long-term effects of parkinsonism?”
Use Your Glossary: If you're unsure about any medical terms your doctor uses, refer to the glossary on our website. You can also ask your doctor to explain a term in simpler language or ask them to write it down for you.
Take Notes: Bring a notebook to appointments to jot down important information. This will help you keep track of what your doctor says and allow you to refer back to it later. Many families also find it helpful to write down questions before the appointment, so nothing is forgotten.
Bring a Support Person: It’s often helpful to bring a family member or friend to appointments. They can help take notes, ask questions you might forget, and offer emotional support.
Be Honest About Symptoms: Share any changes in your child’s condition, even if they seem small. The more information your doctor has, the better they can tailor treatment plans to your child’s needs.
Request Follow-Up: If you feel overwhelmed by the information given during an appointment, don’t hesitate to ask for follow-up discussions. Many doctors are open to scheduling additional time to answer your questions or provide resources for further understanding.
