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Swallowing and HD

At some point in the progression of HD, most individuals experience swallowing difficulties.  Food is a big part of everyone's life, and therefore swallowing problems can have a huge impact on a person's ability to enjoy and safely manage food and fluid intake. The aim of this fact sheet is to give an overview of the difficulties often seen in people with HD.

How does swallowing usually work?   

After food is chewed to form a bolus (small cohesive ball) or a sip is taken from a drink, the tongue moves the substance to the back of the mouth. A complex series of actions then occurs in the space of 1 to 2 seconds which:
1. Closes off the passage that prevents food or drink going from the mouth up into the nose (known as nasal regurgitation).
2. Closes off the airway passage which prevents food or drink from going down into the lungs (known as aspiration) or lodging in the wind pipe vocal cords (known as partial or total blockage that can lead to asphyxiation).
3. Opens the food passage and moves the food or drink down towards the stomach.

What happens to the process of swallowing in people with HD?

As HD progresses, a range of swallowing difficulties may present.  Swallowing difficulty is called dysphagia and can be experienced by people with a range of degenerative conditions (such as Motor Neurone Disease) and non-degenerative conditions such as "stroke". It is important to note that although there is a fairly typical profile of swallowing impairment in HD, the presentation of dysphagia can vary in severity, rate of progression and general characteristics.

Options to manage swallowing difficulties

The options available to manage swallowing difficulties change as an individual's condition progresses.  Discussions about future feeding options are important as discussions are best made before a crisis occurs, communication skills are lost or the individual is unable to competently decide for themselves.  The following are options available to people with varying degrees of dysphagia.

Food modifications.

At the onset of swallowing difficulties, a person may start to make their own modifications to their diet (such as avoid nuts or fizzy drinks). Contact with a Speech Pathologist is recommended at this stage and results in personalised strategies to enhance swallowing safety. This assessment identifies foods and drinks that are ‘safe' for that person.  Regular reviews are necessary to identify decline, assess the risk and recommend texture modifications (such as thickened drinks and soft, minced or pureed meals).   As time progresses,  a video fluoroscopy assessment (moving X-ray of the swallow) is often used to objectively establish whether food or fluid modifications are sufficient to prevent aspiration.

PEG Tube Feeding

This is an option for individuals if they are no longer able to consume enough food and fluid to safely maintain their current weight and health. "A feeding tube should be suggested by the physician after swallowing tests have determined that the HD patient can no longer eat sufficiently to maintain their body weight.  Then it is the patient/ caregiver's responsibility to make the determination whether or not they want to have this procedure done in order to maintain life".There are several other points to be aware of when investigating the options of tube feeding and your speech pathologist would be happy to discuss these with you.  This information is valuable to have at an early stage, as long term discussion often assists in  people themselves being able to clearly state their preference regarding alternative feeding options.  It is important to understand that any food or fluid modifications are only made after the individual has been thoroughly assessed, and found to be at significant risk of choking, aspiration pneumonia, or weight loss.  Your Speech Pathologist will make an effort to ensure that all parties fully understand the reasons behind any modification and how it can be achieved.  Regular review assessments are also offered to monitor swallowing safety.

The following table shows some of the physical difficulties that may occur, and the effect they have on the individual's ability to safely manage food and drink.


Physical Sign

Effect on Swallowing

Involuntary arm and trunk movements make it difficult to cut food into manageable pieces and transfer this food adequately from the plate to the mouth.

Person often takes overly large amounts of food or drink at a time ,increasing their risk of choking.

Person often spills large amounts of food -resulting in embarrassment and reduction in the amount of food that is actually consumed.

Unexpected gulps of air during swallowing.

Often result in *aspiration or choking episodes.  (*aspiration is when food or fluid travels into the airway instead of the food pipe. This can cause a serious condition known as ‘aspiration pneumonia')

Reduced strength of muscles in the throat, result in difficulties moving the food through the throat to the stomach.

Need to swallow several times per mouthful.

Feeling that there is food still "lodged" in the throat.

Involuntary movements of the lips and tongue result in difficulties controlling saliva.

Results in drooling (when the saliva leaves the lips) and coughing (when the saliva flows into the throat unexpectedly).

Involuntary movements within the chest cavity result in difficulties containing the food in the stomach

Regurgitation (reflux), vomiting or sensation of food being stuck at the bottom of the throat

Reduced desire to eat a full meal on a regular basis.

Results in weight loss (this is made more serious by the fact that the person's involuntary movements burn vast amounts of energy per day and therefore significant weight loss occurs).

Thank you to Neurosciences Unit