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Huntington's Disease Youth Organization

Why do people with Huntingtons not talk well?

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Q. “Why do people with Huntingtons not talk well?” Rebecca, 13, England

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A. Most people with HD talk well and can communicate effectively with loved ones. However, some can have difficulty in communicating. There seem to be several reasons for this.

Articulation may be impaired because of chorea of the tongue and throat muscles. This can result in slurred speech.

Some people with HD make less effort to initiate speech. In some cases this might be due to depression and in other cases to difficulty in initiating sentences. Drowsiness as a result of medications can also be a factor.

Often it is possible to help people with HD to communicate better. Revising medications to reduce either drowsiness or chorea might be worthwhile. If reduced initiation of speech is a problem, then the HD person should be checked for depression and if it’s an issue then most times anti-depressants can be effective.

People with HD often have trouble concentrating and get easily distracted. If they are in a noisy place with lots of distractions then it will be harder for them to focus on a conversation. Talking in a quiet place without background noise (e.g. turn off the television or radio) will help them follow a conversation & will make it easier for them to participate. It is also worthwhile giving them some extra time to speak. That is, because initiation of a sentence is difficult they might just need some extra time to say what they want to say.

When HD is advanced most people stop speaking. However, they often still follow conversations and are interested in what’s happening to their loved ones. Talking to them about what is happening to their family and friends and the wider world is important for their happiness and allows them to remain participating members of their family.

When I visit my patients with advanced HD, family often come to the appointment. It always impresses me how often the HD person listens to what their family is saying and gets value from hearing family news. That is, worthwhile communication can still be possible even when someone is very unwell and says little.

Andrew Churchyard - Neurologist