Huntington’s Disease and Speech Therapy

Huntington’s Disease is a neurological condition that damages nerve cells in the brain. This damage begins to cause involuntary twitching movements (chorea), and loss of coordination.

As Huntington’s disease progresses, people with the condition gradually lose the ability to control the muscles in their mouth, throat and tongue. This makes speaking and eating very difficult. People with Huntington’s Disease might also have trouble understanding others, which can make talking even harder.

If yourself or a loved one is suffering from Huntington’s Disease, a Speech Pathologist may be able to help with speaking and swallowing. We use a variety of exercises and tools that have been developed to help improve quality of life for people with Huntington’s and other neurological conditions.

You may want to see a Speech Pathologist soon after a Huntington’s Disease diagnosis, so we can develop a plan to handle physical changes as the disease progresses.

We also recommend you see a speech pathologist when changes begin to appear, such as:

• Slurred or slowed-down speech
• Speaking at a low volume
• Unusual rate or pitch of speech
• Difficulty swallowing
• Wet breath sounds and frequent throat clearing
• Regular chest infections
• Reluctance to eat, resulting in weight loss

While vocal disturbances begin to appear early in the disease’s progress, eventually speech can become unintelligible. What’s even more concerning is that swallowing difficulties can result in a real choking hazard.

Speech pathologists can help identify areas of speech limitations in patients with Huntington’s, and teach methods to help keep them functioning as optimally as possible.

For example, we might recommend breathing exercises to help coordinate breath while talking, which can help to keep patterns of speech consistent. We can also guide and educate family members, caregivers and friends on how to optimise communication.

Additionally, we might also teach exercises to promote muscular control for safe chewing and swallowing.

Realistically, every patient is different and we design our treatment programmes to meet each patient’s individual needs.

As Huntington’s Disease progresses, patients can lose their ability to speak altogether. That’s where communication devices can come into play.

Communication aids such as tablets, symbol/photo books and language boards fall into what’s known as augmentative and alternative techniques, or AAC. They are designed to be simple, effective methods to help non-verbal people communicate their thoughts without having to speak.

There are several types of AAC – unaided/aided and non-electronic/electronic

• Unaided systems include various forms of communication without the need for external tools such as gestures, body language, and sign language.
• Aided systems use some kind of tool or device. For instance, pointing to letters or pictures on a board is a basic aided system.
• Non-electronic AAC refers to communication strategies which involve the use of equipment that is not electronic.
• Electronic systems involve technology such as iPad apps, messaging tools and dedicated communication devices.

Some examples of AAC that are of specific benefit to people with Huntington’s disease include personal identification introduction cards, or charts where they can point to their mood or desire (food, drink, outside, etc)

A communication aid called the Talking Mat has also been shown to benefit those with Huntington’s. The Talking Mat has many little pictures all laid out on a physical mat or a digital device (such as a phone or tablet). Each picture is categorised into topics, options, and scales. By pointing to different pictures, people with Huntington’s can choose what they would like to talk about, ask specific questions, and share their feelings on various subjects.

These AAC conversations not only help patients express their fundamental needs, but they also promote more inclusive and stimulating social interactions too.

If you or a loved one has Huntington’s disease, a speech pathologist can help keep the lines of communication open for as long as possible.