Tardive dyskinesia (TD) is a movement disorder that causes involuntary and repetitive movements in different parts of the body. These movements often affect the face, lips, jaw, and tongue, but they can also occur in other areas.

TD is typically caused by long-term use of certain medications, especially antipsychotics prescribed for conditions like schizophrenia and bipolar disorder. These drugs affect dopamine levels in the brain, which plays a crucial role in muscle control. Over time, the brain may become more sensitive to dopamine, leading to uncontrollable movements.

Why Tracking TD Symptoms Matters

Monitoring TD symptoms helps you and your healthcare team identify patterns, track progression, and evaluate the effectiveness of treatments. Keeping a detailed record ensures that you don’t miss subtle changes that could indicate a need for adjustments in medication or therapy.

How to Track Your TD Symptoms

1. Choose a Tracking Method

Pick a tracking method that fits your daily routine. Options include:

• Mobile apps: Consider using a notetaking app or the TD Symptom Tracker app by the National Organization for Tardive Dyskinesia.
• Pen and paper: Keep a journal or chart handy for quick notes.
• Voice recordings: If writing isn’t convenient, use a voice memo app to record symptoms verbally.

2. Record the Time

TD symptoms may fluctuate throughout the day. Note the time when symptoms occur and compare this with:

• Medication intake
• Meals and caffeine consumption
• Stress levels or emotional changes

3. Identify Triggers and Situational Factors

Certain factors might worsen or alleviate symptoms. Consider tracking:

• Sleep quality and duration
• Stress levels
• Caffeine or alcohol intake
• Physical activity levels

4. Note Frequency and Severity

TD symptoms vary from person to person. Record:

• How often movements occur
• The duration of symptoms
• Whether the symptoms are mild, moderate, or severe

5. Document Affected Body Parts

Make specific notes about which areas of your body are experiencing involuntary movements. Include:

• Which side of the body is affected
• The type of movement (twitching, jerking, grimacing, etc.)
• Whether movements are increasing or decreasing over time

6. Observe Changes and Patterns

Over time, your symptom records may reveal trends. Review your notes weekly or monthly to:

• Identify new symptoms
• Recognize worsening or improving trends
• Determine if certain activities or foods influence symptoms

7. Share Information with Your Doctor

Your records can help your doctor make informed treatment decisions. Consider bringing:

• A summary of symptom patterns
• Any significant changes or worsening trends
• Questions about alternative treatment options

Medical Assessments for TD

The Abnormal Involuntary Movement Scale (AIMS)

Doctors use the AIMS test every 3 to 6 months to evaluate TD symptoms. Each affected body part is scored from 0 (no symptoms) to 4 (severe symptoms). A higher total score indicates more severe TD.

The Tardive Dyskinesia Impact Scale (TDIS)

This newer tool assesses how TD symptoms affect your quality of life, including:

• Emotional distress
• Social interactions
• Daily activities

Final Thoughts

Tardive dyskinesia (TD) is a challenging condition, but tracking your symptoms can provide valuable insights for better management. By monitoring when and how symptoms occur, you can help your healthcare team adjust treatments and improve your quality of life. Start tracking today and take a proactive step toward managing your TD more effectively!