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Huntington's disease - Living with Huntington's disease

NHS Choices Medical Reference

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Huntington's disease puts a great strain on relationships and is very stressful and upsetting to the family. It is distressing to see a family member's state of mind deteriorate so much that they may not be like their former self at all.

Daily routines such as getting dressed and eating meals can be frustrating and exhausting, however, help is available.

Help with communication

  • Speech and language therapy can improve communication skills, improve memory and teach alternative ways of communicating. Speech therapy can also help with swallowing difficulties.
  • Communication aids can sometimes be helpful. These enable communication without the need for talking. For example, you can point to symbols on a chart to indicate your mood or whether you are hungry.

The family of the person with Huntington's disease will need to be patient and supportive and perhaps try alternative ways of communication if speech is a problem. For more information on communication skills in Huntington's disease, go to the factsheet listed at the bottom of this page.

Help with mealtimes

People with Huntington's disease need to have a high-calorie diet. A dietitian can help you to work out an appropriate diet plan.

To help with eating and drinking, food should be easy to chew, swallow and digest. Feeding equipment is available, such as special straws and non-slip mats. For more tips on diet and help with feeding, read the factsheets listed below.

In the late stages of the disease, it may be necessary to use a tube that goes directly into the stomach for feeding. You may find it useful to read Swallowing Problems and Feeding Tubes in Huntington's Disease. You can also email the Royal Hospital for Neurodisability (info@rhn.org.uk) for information leaflets on swallowing difficulties and artificial nutrition in Huntington's disease.

If you do not want to be artificially fed in the later stages of the disease, you should make your wishes known to your family and consider making an advance directive (a living will).

Occupational therapy

An occupational therapist can help you with your day-to-day activities. Your home can be specially adapted by social services to make life easier for you, as you may be at risk of injuring yourself in a fall or accidentally creating a fire.

You may need to have your shower, bath, chairs and bed adapted, and you may need to think about wheelchair access (see the factsheet below for more information).

Physiotherapy

A physiotherapist can help you with your mobility and balance by using a range of treatments, including manipulation, massage, exercise, electrotherapy and hydrotherapy (see the A-Z topic on physiotherapy for more information). You may be referred to a physiotherapist through your GP or through social services.

Factsheets

The Huntington's Disease Association has a number of useful PDF factsheets giving advice on the following:

Medical Review: January 30, 2009
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