5 Tips for Putting Together Your Tardive Dyskinesia Support Team

Imagine your ideal support team. Does it include friends and family? Coworkers? The person who delivers your mail each day with a kind word and a smile? 

Now imagine your ideal tardive dyskinesia (TD) support team. Is that mail person still on it? If not, maybe they should be! When living with a chronic condition like tardive dyskinesia, social interaction can go a long way in helping you navigate each day. We’ve compiled a list of things to consider when building your tardive dyskinesia support team, and spoiler alert: it includes more than just health care professionals.

1. Remember your social side.

From self-esteem and body image, to dating and maintaining relationships with loved ones, TD symptoms can affect life in many different ways. If you have felt isolated as a result of your TD diagnosis or felt like your TD symptoms have impacted your social life, you are not alone. Confiding in someone you trust – like a friend, family member, or health care provider – about how you’ve been feeling can be a helpful first step in addressing the social impact of TD. 

Studies have also shown that positive social interactions, even with someone you don’t know or a casual acquaintance, can decrease stress, which may trigger or worsen TD symptoms. Mail person, you’ve made the cut. 

1. Find peer support.

Peer support brings together people who have had the same (or similar) experiences. Talking with someone who can relate to what you are experiencing can be extremely validating and can help you better navigate your TD diagnosis. Others diagnosed with tardive dyskinesia may be able to offer tips and tricks to help manage your symptoms or suggestions for finding a specialist. 

1. Take advantage of technology.

Technology offers great opportunities for connection. Sometimes, conflicting schedules make it difficult or impossible to meet up with a loved one. Try to schedule a call to connect with a loved one when you can’t spend time together in person. Similarly, it can be difficult to find others whose health journey is similar to your own – online health communities like The Mighty offer a safe place for you to find that connection. Finally, telehealth allows easier access to medical appointments, so don’t forget to check if this option is available to you. 

1. Follow the guidance of trusted health care providers.

Certain mental health medicines can cause tardive dyskinesia, but you shouldn’t stop, adjust, or switch your treatment after your TD diagnosis without talking to your healthcare provider. Your TD support team should include health care providers you trust, who can help you make informed decisions about your treatment plan, including how to best treat your TD symptoms while also managing your other health conditions. 

1. Therapy, therapy, therapy. 

Therapy can be an important part of your TD support team. Here are just a few specialists to consider: 

• Speech Therapists: Oftentimes the first sign of TD is irregular tongue movements. These can be very small at first and you may not notice them right away. Other common symptoms include lip smacking, making noises or facial expressions outside your control, puffing out your cheeks, and difficulty swallowing. Speech therapy can help patients control some of these movements and improve communication. Speech therapists can also teach patients ways to chew and swallow more safely and efficiently, including tips to take smaller bites, chew slowly, and be mindful of the textures of the foods you eat.

• Physical Therapists: Irregular movements are not limited to the facial muscles in TD, but can impact other muscle groups interfering with balance and coordination. A physical therapist will begin with an assessment of your functionality and learn how TD interferes with your life and the activities you like to do. They can teach you exercises to retrain muscle patterns.

• Occupational Therapists: Occupational therapists help a person learn ways to accomplish everyday tasks. They can do this through muscle retraining exercises like physical therapists or by recommending tools to help you achieve your daily goals. For example, if you experience jerky hand movements that make preparing food difficult or dangerous, there are one-handed cutting boards, cut resistant gloves, and weighted utensils that could aid in your ability to cook. 

• Psychotherapists: We could all use someone to talk to. When managing a health condition, meeting regularly with a psychologist can help you productively process emotions as they arise. A therapist can also provide stress management techniques to prevent worsening of TD symptoms. It’s common to struggle with the “new normal” of life with TD. Speaking with a therapist may help.  

As you navigate life with TD, remember that you are not alone. With the proper support team backing you, you can confidently face the challenges tardive dyskinesia sends your way.