Tardive dyskinesia: preparing for a healthcare appointment

Tardive dyskinesia (TD) is a neurological condition associated with the use of medications that act on dopamine receptors in the brain. Most commonly, TD is associated with the use of certain neuroleptic medications, also known as antipsychotic medications, which are used in the treatment of schizophrenia, bipolar disorder, and other serious mental illnesses. People with TD experience involuntary, abnormal movements that can affect the face, tongue, limbs, neck and trunk.

Treatment can involve adjustments to the medications that are causing TD, medications to reduce involuntary movements, and supportive treatments like physical and occupational therapy. While treatment is usually overseen by a neurologist (and sometimes a neurologist that is a movement disorder specialist), people with TD will often work with multiple healthcare providers.

If you or a loved one is living with TD, it helps to think of yourself as a member of this multidisciplinary team. While your healthcare providers will be your best source of information, they also rely on you for information—changes in symptoms, unmet needs in a treatment plan, side effects, concerns that can affect treatment.

One of the best things you can do is go to your appointments prepared. With that in mind, here is a checklist of steps and strategies that can help.

Before an appointment

• Create a list of what you want to discuss at the appointment, such as specific topics you want to cover or questions you want to ask. Prioritize what is most important for this appointment.
• Ask your healthcare provider if they need any information from you, such as medical records, test results, or other paperwork. Ask about how they want to receive this information and when they need it.
• If you have a question related to your appointment, call ahead and ask. For example, asking for an idea of how long you will be at an appointment.
• Consider any arrangements you need to make before the appointment, such as requesting time off work or help with transportation.
• Consider bringing a family member or friend to take notes and provide support. At the very least, plan how you will take notes during the appointment.

At your appointment

• Update your provider about any changes in symptoms, including new symptoms, symptoms that have increased in severity, and improvements in symptoms.
• Discuss any changes in how you feel, including moods, energy level, sleep, or day-to-day habits.
• Discuss anything that has become more difficult, challenging, or frustrating. This can be something related to your day-to-day activities, to work or social situations, or anything else that you are concerned about. Ask your healthcare provider what can be done to address these challenges or needs.
• Review your current treatment plan for TD. This includes medications you are taking as well as any non-medication therapies (for example, physical therapy).
• Discuss your feelings about your current treatments. Be honest if you feel that there are parts of your treatment plan that are not working well or are not working well enough.
• Take notes during your appointment or have a friend/loved one take notes. You should also ask your provider for copies of any documents related to your appointment.
• Ask your healthcare provider if they recommend any changes to your treatment plan.

If you are prescribed a new medication or therapy:

• Ask how the therapy works and why your healthcare provider recommends this therapy as part of your treatment plan.
• Ask what kind of result you can expect from this therapy and how long it may take to see this result.
• If you are prescribed a new medication, ask about the potential side effects or drug interactions. Your healthcare provider should have an updated list of all medications you take, including all prescription medications, over-the-counter medications, and supplements. Alcohol and recreational drug use are also important to discuss.
• Ask what the therapy costs and what steps you can take if you have concerns about the cost of treatment.

After your appointment

Immediately after your appointment, take a few minutes to review the notes you have and write down anything else you want to include. Ideally, you should leave your appointment with clear instructions about what you need to do next, whether it is making a follow-up appointment, filling a prescription, or getting your healthcare provider information that they need.