Huntington’s disease (HD) affects many skills required for communication, such as muscle strength and control, co-ordination, memory, perception, learning and problem-solving. As the disease progresses, you may notice someone with HD speaking more slowly, with progressively fewer and simpler words. Eventually the person may lose the ability to talk altogether.
Early intervention is best, but at every stage of the disease speech therapy can help keep communication (and swallowing) as functional as possible by teaching techniques to form words. A therapist can also introduce alternative communication devices, such as word, alphabet or picture boards, or electronic devices if appropriate. Therapy can also include respiratory exercises that improve breath control, and exercises to test and strengthen language understanding and memory.
Communication is affected in a number of ways:
– Difficulty with spontaneously starting or holding conversations, or remembering what has been said; a person with HD may respond only in brief phrases of a few words.
– Problems articulating thoughts.
– Reduced vocabulary.
– Difficulty understanding and responding to what people are saying or to complicated instructions.
– Reduced ability to reason, learn, make judgements, organise thoughts or solve problems.
– Difficulty concentrating.
– Hoarse or harsh voice.
– Stuttering or inability to speak.
– Problems with comprehending numbers.
– Rhythm and tone is affected: speech is too loud or too soft, too slow or too fast.
– Mumbling or mispronunciation.
– Breathing and breath co-ordination is affected, which affects the ability to form words.
– Muscle weakness and poor co-ordination of the mouth, throat and jaw.
– Certain words or phrases may be excessively repeated, or the person may repeat back to you what you’ve just said.
Similarly, the ability to read and write is affected by physical and cognitive deterioration.
These problems vary in type and severity from person to person, and as the disease progresses. Most people can understand what’s being said to them up to the end, even if they cannot speak – so it’s important to keep talking to them and including them in normal conversations.
Someone struggling with speech may find it helpful to speak slowly and emphatically, one word at a time, in short sentences. He or she should repeat or rephrase thoughts if necessary. Take a deep breath before beginning, to improve volume. It might be useful to use gestures.
The person with HD must often rely on feedback and cues from the person listening to them. If you’re conversing with someone with speech problems, it’s helpful to sometimes repeat their own words back to them to show you’re hearing and understanding. Talk slowly and clearly, repeating words or rephrasing if required; use yes/no questions; and allow time for conversation, so the person can communicate in a slow and focused manner. It might help to spell some words out, or to give other non-verbal cues.
Stubbs, B. The Role of the Physiotherapist in HD, Newsletter, June 2007, HD Association, UK. Pipathsouk, A. Physical Therapy and HD Treatment and Management, HOPES. Caring for People with HD; Searle, J. Communication Strategies for those with HD; and Dubinsky, R. Home Safety in HD, Kansas University Medical Center. National institute of Neurological Disorders and Stroke, www.ninds.nih.gov. Huntington’s New South Wales, www.huntingtonsnsw.org.au. HD Society of America, www.hdsa.org