Tardive dyskinesia (TD)
Find information on what tardive dyskinesia is, what causes it and what you can do to manage it.
Coping with tardive dyskinesia
Living with tardive dyskinesia (TD) can be really difficult. But even if you experience it for a long time, there are still things that could help you manage symptoms and cope day-to-day.
This page covers some self-care suggestions for you to consider:
- Try to reduce stress
- Build your support network
- Look after your physical health
- Adapt activities and tasks
- Find specialist support
Everyone experiences TD differently – not all of these suggestions will help everyone. What's important is finding what works best for you.
Many people with TD find that symptoms are worse or more difficult to manage in times of stress. Stress can sometimes be unavoidable, but it may help to find ways to manage stress when possible.
- Talk to someone you trust. It could help to share your worries with someone. They might be able to help recognise signs of your symptoms starting or changing. They could also help with physical activities you find difficult, like carrying shopping or doing housework.
- Try peer support. Peer support brings together people who have had similar experiences, in order to support each other. For example, try talking to people who have also experienced TD or have taken the same medication. For more information, see our pages on peer support.
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.
Looking after your physical health can reduce stress. As well as this, some people find it can also make TD easier to manage. Try to:
These factors can all help your physical health. They are also beneficial to your mental health in general.
For more information on looking after your physical health, see our information on everyday living.
My wife massaged my neck and arms after the episodes to help with the discomfort.
Some people with TD find that the symptoms make certain tasks very difficult to manage. These are some adaptations which may help with daily activities and tasks:
- 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. A list of equipment that some people find useful is available on the Parkinson's UK website.
- 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 be really helpful when writing.
- Take a trolley when shopping, or considering shopping online and getting it delivered, if 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.
The National Tremor Foundation website offers a longer list of tips for everyday living.
Some of these suggestions involve purchasing 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.
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.
You could try contacting a specialist organisation for support for your symptoms, or your diagnosis. You might also find it useful to connect with others who have experienced TD.
Depending on what sort of support you find useful, you could contact:
- The Dystonia Society. 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 all forms of tremor, but doesn't specifically cover tardive dyskinesia. You might find their information and support groups helpful if you are affected by tremor-like movement problems.
- Parkinson's UK has information on coping with movement disorders, including some types of dyskinesia and anti-Parkinson's drugs.
- Some organisations also provide support for specific mental health problems. For example, Bipolar UK can help if you experience bipolar disorder. The Hearing Voices Network supports anyone experiencing psychosis. For more information and useful contacts for different diagnoses, search our A-Z of mental health.
For more information, see our page on useful contacts for TD.
This information was published in December 2021. We will revise it in 2024.
References and bibliography available on request.
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