Living with Huntington's disease
Help is available to assist people with Huntington's disease in their day-to-day living. This might include physiotherapy, occupational therapy and speech therapy.
Huntington's disease puts a great deal of strain on relationships, and is very stressful and upsetting for the family. It's 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. The types of help outlined below aim to ease the strain of the condition by improving skills that may deteriorate.
Help with communication
Speech and language therapy can improve communication skills, memory and teach alternative ways of communicating. It can also help with swallowing problems.
Communication aids can sometimes be helpful, as they allow communication without the need for talking. For example, you can point to symbols on a chart to indicate your mood or whether you're hungry.
The family of someone with Huntington's disease will need to be patient and supportive. They can try alternative ways of communicating if speech is a problem.
Help with mealtimes
People with Huntington's disease need to have a high-calorie diet. A dietitian can help you work out an appropriate diet plan.
To help with eating and drinking, food should be easy to chew, swallow and digest. It can be cut into small pieces or puréed to prevent choking. Feeding equipment is also available, such as special straws and non-slip mats.
At some point, it may be necessary to use a feeding tube that goes directly into the stomach. If a person with Huntington's disease doesn't want to be artificially fed during the later stages of the condition, they should make their wishes known to their family and doctor. They may want to consider making an advance decision (a living will) or a statement of wishes and preferences.
The Huntington's Disease Association has more information about eating and swallowing (PDF, 320kb). You can also email the Royal Hospital for Neuro-disability for further information and advice about swallowing difficulties and artificial nutrition. Their telephone number is 020 8780 4500, or you can email them on firstname.lastname@example.org.
An occupational therapist (OT) can help with day-to-day activities. Your home can be adapted by social services to make life easier for a person with Huntington's disease, as they may be at risk of injury from a fall or accidentally starting a fire.
Your shower, bath, chairs and bed may need to be adapted. You may also need to think about wheelchair access.
Read more about occupational therapy and how it can help.
A physiotherapist can help with mobility and balance by using a range of treatments, including manipulation, massage, exercise, electrotherapy and hydrotherapy. You may be referred to a physiotherapist through your GP or social services.
Read more about physiotherapy.
Electronic assistive technology
The Royal Hospital for Neuro-disability provides an electronic assistive technology (EAT) service. It's made up of a team of healthcare professionals who provide EAT equipment for patients and residents within the hospital, as well as for people with disabilities living in the community or at other hospitals or units.
- communication aids
- computers and software
- switches and other access devices
- powered wheelchair controls
- environmental controls
Information about Huntington's disease
The Huntington's Disease Association has a number of useful factsheets that provide advice about a range of topics, including:
- behavioural problems
- communication skills
- sexual problems
- diet, eating and swallowing
- driving (see below)
- seating, equipment and adaptations
- information for teenagers
The charity can also help you explore the housing options available when full-time care is needed.
It's also worth finding out what benefits you may be entitled to if you have Huntington’s disease, or if you're looking after someone with it.
You can do this through the Huntington's Disease Association or by contacting the Citizens Advice Bureau (CAB).
Read more about benefits if you need care, and carers’ benefits.
A person diagnosed with Huntington's disease who's started to experience clinical features should inform the Driver and Vehicle Licensing Agency (DVLA) because it will affect their ability to drive.
The DVLA will write to your doctor, with your permission, to ask for their opinion about your condition. Based on that information, a decision will be made about whether you can still drive and for how long before another assessment is needed.
There's no need to tell the DVLA if you're carrying the faulty gene but haven't yet developed the features of the condition.
A patient's perspective
"I'm not as whole as I was. My thought processes have slowed down and it takes enormous self-discipline to do ordinary things like getting dressed – it's exhausting.
"I recognised these changes in myself years before anyone else did, and it's important that other people (including healthcare professionals) just accept this. The changes don't have to be measurable.
"They can't reassure me that all is well, but they can support me. By accepting that changes are happening, they give me permission to adapt my life at an early stage.
"I have changed my high-powered job to an 'ordinary' job, for example, which has taken pressure off me and allowed me to put energy into other things.
The end stage of Huntington's disease will happen no matter what, but I will live most of my life before this point and I want to make the most of it."
Sue Walters, Hertfordshire
(Taken from BMJ 2010;340:c3109)
Page last reviewed: 30/10/2014
Next review due: 30/10/2016