As Huntington's disease progresses, you may find it increasingly
difficult to communicate with the affected individual. You may not
understand what the person is trying to say to you. Or, it may seem
that he or she does not understand you. Frustration and angry
outbursts may accompany communication problems.
Problems with communication vary in type and severity among
individuals with Huntington's disease. Be aware that these problems
can be particularly scary, frustrating, embarrassing and isolating
for the affected person. Common speech-related problems
Weakness and inability to coordinate the lips, tongue and
throatDisruption in muscle movements that coordinate speechTalking too slow or too fastDifficulty putting thoughts into wordsIncorrect pronunciation of wordsInability to initiate conversationInappropriate loudnessHoarse or strained voiceReplying in only one or two wordsRepeating words and phrasesStutteringTrouble understanding informationDifficulty with reading and writing
Your understanding, patience, sensitivity and creativity can
help ease communication problems. Be aware of your body language
and what it says to the patient. Without saying a word, you may be
communicating frustration, impatience and displeasure. Try to keep
your body language positive and open. Also, keep in mind that many
people with Huntington's disease stop initiating conversation,
therefore, you will need to take a more active role in
Tips for better communication
- Realize that you are responsible for managing the
- Reduce noise and other distractions such as groups, radios and
- Speak simply and try to stick to familiar topics.
- If you feel that the person didn't understand you, repeat or
rephrase your words.
- Be patient when the person is trying to speak and give him or
her plenty of time to respond. Offer one or two cue words, if
necessary, but be careful not to speak for him or her. Ask the
person to describe what he or she is trying to say, if he or she
can't think of the word.
- If you don't understand what the person has said, as for
- When necessary, ask the individual to speak more slowly, repeat
words or sentences, or rephrase sentences.
- Encourage the individual to speak louder and use gestures.
- Pay attention to body language-gestures, facial expressions,
- If the person is having difficulty stating or deciding what he
or she wants, give specific choices. For example, rather than ask
"Where do you want to go out to eat?," you can ask "Would you like
Chinese or Mexican food?"
- If the individual is having severe communication problems,
technical communication devices can help, as well as alphabet
boards, word boards, picture boards, and signal or yes-no
- Communication may deteriorate to the point where you can no
longer understand the person at all. You can help prevent feelings
of isolation and despair by continuing to talk to him or her.
If communication problems are too frustrating and upsetting, a
speech-language pathologist can help. Speech-language pathologists
can work with individuals at every stage of Huntington's