How to Talk with Your Doctor About Dystonia


A dystonia diagnosis can be life changing. To get the best outcome from your treatment, you should be actively involved in the development and management of your care plan.

Research has shown that people who have strong partnerships with their healthcare providers do better both physically and emotionally. Central to developing a strong partnership is good communication with your doctor, which sounds simple but has its challenges. The time limitations of medical appointments, stress brought on by waiting for answers, and simply not knowing what questions to ask are a few examples. In addition, identifying a doctor who shares your communication style— who you are in sync with–contributes a great deal to effective communication.

To achieve effective communication, some planning is necessary and starts with finding the provider that is a good fit for you. It is important that you feel comfortable talking with your doctor about how you feel, how your treatment is going, and about your questions, concerns, and expectations from your treatment plan. Don’t be afraid to recognize that the doctor you are currently working with may not meet your needs. Always remember that the No. 1 expert on your dystonia is you.

Preparing for your appointment

1.    Questions: Make a list of the questions you want your doctor to answer. It is easy to forget what questions you have when you are waiting for your appointment. Having a list will help you focus on the most important questions and help your doctor respond to them.

2.    Bring another person if you can: If possible, bring someone with you to take notes and retain the information that is shared. A family member or good friend will also be there to assist and support you.

3.    Medications: Bring a list of your medications to the appointment. It is important for your doctor to know all the medications you are taking, including dietary supplements.

4.    Learn about dystonia: Inform yourself about dystonia and the treatment options available. Stay informed about what is happening in dystonia treatment, so you can talk with your doctor about whether a change in your treatment plan will benefit you.

During your appointment

During your appointment, share your list of questions with your doctor. Be mindful of their time limitations and try to ensure your most important questions get addressed by letting your doctor know your most pressing questions first. Don’t be surprised.

if it is recommended that you make another appointment just to speak with your doctor about all your questions. You can also ask if you can speak with the nurse regarding your questions.

Some practical steps to consider
  • Repeat the answers back to your doctor to make sure you got them right. Take notes and ask if you  can record the responses to your questions if you are not able to have someone with you.
  • If the responses are not clear or if you still do not understand, ask your doctor to explain it more simply or perhaps to show you a diagram to better explain.
  • If your doctor uses an online patient portal to communicate with you and you need help in understanding how to use the portal, ask if there is someone in the office who can assist you in learning how to use the portal.
Questions Patients Commonly Ask Healthcare Providers

  • What form of dystonia do I have?
  • How will my dystonia affect my day-to-day life?
  • Is my dystonia genetic? Should I be genetically tested? Should my children be tested?
  • Can I expect my dystonia to get worse? Will it spread?
  • What are my treatment options and what do you recommend?
  • What can I expect from my treatment? When will it start to work? How do I know if it is not working?
  • What are the potential side effects?
  • What is the cost of the proposed treatment?
  • What is the brand and generic names of the drugs being prescribed?
  • If you have pain, ask how your pain will be treated.
  • What is the best way to reach you with questions?

Having your questions answered and your concerns addressed can help reduce the stress and anxiety of living with dystonia. Being an equal partner in your healthcare and having productive conversations with your doctor can make a big difference in getting the most of your treatment.

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Reprinted and adapted with permission from DMRF Dystonia Dialogue, Winter 2023 Vol 4G, No 3.

Last update: Apr 2024