Living with tardive dyskinesia (TD) can be really difficult. But even if you can't get rid of TD, there are still things that could help you manage the symptoms and cope day-to-day. This page has some suggestions for you to consider:
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.
Look after your physical health
- Try to get enough sleep. Sleep can give you the energy to cope with difficult feelings and experiences. (See our page on coping with sleep problems for more information.)
- Think about your diet. Eating regularly and keeping your blood sugar stable can make a difference to your mood and energy levels. This can mean you feel more able to cope with TD. If your symptoms affect your ability to eat, it might help to focus on the types of foods you’re more able to swallow. (See our page on food and mood for more information.)
- Spend time in green space. Being outside or doing activities in green space can reduce stress and improve your wellbeing. (See our pages on nature and mental health for more information.)
- Try to do some physical activity. Exercise can be really helpful for your mental wellbeing. (See our pages on physical activity for more information.)
Focus on your wellbeing
- Learn ways to manage stress. Living with TD can be really stressful – and feeling stressed can make it feel more difficult to manage your symptoms. There are lots of things that could help you cope with feeling stressed. (See our pages on managing stress for more information.)
- Try relaxation techniques. Relaxation can help you look after your wellbeing when you are feeling stressed. If you know that a certain activity helps you feel more relaxed – such as having a bath, listening to music or taking your dog for a walk – make sure you set aside time to do it. (See our pages on relaxation for lots more ideas.)
My wife massaged my neck and arms after the episodes to help with the discomfort.
Build your support network
- Talk to someone you trust. It could help to share your worries, and they might be able to help recognise signs that your symptoms are starting or changing, or help with physical activities you find difficult (like carrying shopping or doing housework).
- Try peer support. Peer support brings together people who’ve had similar experiences to support each other. For example, you could try talking to people who have also experienced TD or have taken the same medication. (Our pages on peer support have more information.)
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.
Find specialist support
You could try contacting a specialist organisation for support for your symptoms, or your diagnosis. You might also find this a way to connect with other people who've experienced TD.
Depending on what sort of support you would find useful, you could think about contacting:
- The National Tremor Foundation supports people experiencing all forms of tremor. While they don't specifically cover tardive dyskinesia, you might find their information and support groups helpful if you’re affected by tremor-like movement problems.
- Parkinsons UK has information on coping with movement disorders, including some types of dyskinesia and anti-Parkinson’s drugs.
This information was published in April 2018 – to be revised in 2021. References are available on request. If you would like to reproduce any of this information see our page on permissions and licensing.