Managing tardive dyskinesia

My 'gurning' has become a bit of a joke in the family and although not everyone can, I find it helps to just laugh about it! Although this doesn't help with the physical pain it helps with the anxiety TD brings.

Get help to manage your day-to-day tasks

If you experience tardive dyskinesia (TD), you may be able to manage day-to-day tasks without help. Or you might find that you need help with some areas of daily life.

In some cases, TD can have a serious impact on your ability to:

• Eat, drink or prepare food easily
• Carry items
• Write with a pen, pencil, or use a smartphone
• Get around by yourself – if you normally drive, you might need to tell the DVLA if you're no longer fit to drive

If your symptoms have this kind of impact on your life, your TD might be considered a disability under the Equality Act 2010. This means you may be eligible for extra help, such as:

• A blue badge. If you drive, you can get more information on this from the Parkinson's UK website.
• Grants or loans to make your home accessible.
• Benefits to help with your financial needs.
• Reasonable adjustments at work, in education, or when using services. For more information on what you might be eligible for, see our page on reasonable adjustments.

Adapt activities and tasks

Adaptations may help with daily activities and tasks. For example, you could:

• Plan ahead for activities that you might need more time to do, or need someone to help you with.
• Get specialist tools for eating, drinking and cooking. Visit the Parkinson's UK website for a list of equipment that may help.
• Try voice activation and dictation if you have a smartphone or tablet. These features allow you to use your device without needing to press buttons on the screen.
• Use pens or pencils with a thick or padded grip, which can help when writing.
• Consider shopping online and getting it delivered, if this is available.
• Talk to your bank about ways you can make signatures easier if you find writing difficult. This could include using photo ID, changing your signature, or using telephone and online banking.
• Swap to electrical appliances such as an electric razor for shaving, or an electric toothbrush for cleaning your teeth.
• Order food that is easier to eat when going out for a meal, such as foods that do not need to be cut up.

Visit the National Tremor Foundation's list of tips to find more ideas. Parkinson's UK also has more suggestions for adapting tasks to make them easier.

Some of these suggestions involve buying equipment. If your TD is considered a disability, you may be able to get grants or benefits to help with the costs. For more information, see our pages on money and mental health.

Try to reduce stress

Many people with TD find that symptoms are worse or more difficult to manage when they're stressed. Stress can sometimes be unavoidable. But it may help to find ways to manage stress when possible.

See our pages on how to manage stress and relaxation techniques for tips and ideas.

Build your support network

It could help to share your worries with someone you trust.

They might be able to help recognise any new or changing symptoms of your TD. They could also help with physical tasks you find difficult, like carrying shopping or doing housework.

You could also try peer support. This brings together people who have had similar experiences to support each other. For example, try talking to people who have also experienced TD or have taken the same medication. See our pages on peer support groups to learn more.

Look after your physical health

Looking after your physical health can help to reduce stress and support your mental health. Some people find it can also make TD easier to manage. 

We have tips to help you:

• Improve your quality of sleep
• Do some physical activity
• Spend time in nature

My wife massaged my neck and arms after the episodes to help with the discomfort.

Find specialist support

You could contact a specialist organisation for support for your symptoms, or your diagnosis. Or to connect you with others who have experienced TD.

Depending on what kind of support you find useful, you could contact these organisations:

• Dystonia UK. Although dystonia is a different condition to TD, they have lots of information on coping with involuntary movements.
• The National Tremor Foundation supports people experiencing different forms of tremor. If you're affected by tremor-like movement problems, their information and support groups may help.
• Parkinson's UK has information on coping with movement disorders, including some types of dyskinesia. And information on Parkinson's drugs.
• Bipolar UK has information and support that can help if you experience bipolar disorder. And the Hearing Voices Network supports anyone experiencing psychosis. 

Our A-Z of mental health also has information and links to organisations who can help with many other mental health problems.

I have never found anything to help me manage TD but as I have grown older I have found it slightly easier to cope with.

Published: January 2025

Next review planned: January 2028

References and bibliography available on request.

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