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Huntington's Disease Caregiving

Swallowing Diagnostic
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Dysphagia, Are You Having Trouble Swallowing, Why Swallowing Trouble Occurs,
Feeding & Swallowing Evaluation and Modified Barium Test
Dysphagia (swallowing disorder) is the most common cause of death in patients with Huntington's Disease. Death can cause from starvation from malnourish-ment, suffocation, or from aspiration causing pneumonia.
Swallowing requires the coordination of movements and reflexes and the motor deterioration involved in Huntington's Disease will soon interfere with normal eating and drinking.
Preventing swallowing problems becomes the duty of the caregiver and with help from a Speech Language Pathologist proper positioning, texture of food, meal duration, and meal setting can be determined and implemented to maintain the nutritional health of the patient.
A nutritionist can also be consulted to make sure that the patient is getting nutrients and calories. Patients with Huntington's Disease require a higher number of calories to maintain or gain weight because of the constant involuntary movement.
Caloric intake should be monitored. Tube feeding may be a supplement to some diets or a last resort if a diet by mouth is not working to the advantage of the patient. The decision to tube feed is a difficult one and professionals should be sought.


  • are you clearing your throat  a lot?
  • does your voice sounds gurgly?
  • are you cooking your food longer?
  • are you eating smaller bites?
  • do you fear eating?
  • do you notice a delay in the swallow after the food is chewed?
  • do you cough during or after the meal?
  • have you noticed any weight loss?
  • are you tired after a meal?
  • do you have to swallow several times to get one bite down?
  • does food or liquid fall from your mouth?


  • difficulty closing the mouth and chewing
  • mucus formation
  • choking on liquids
  • food gulping
  • difficulty coordinating the sequence of the swallow
  • clearing the mouth of excess after the swallow
  • unexpected inspiration of air
    chorea movements interfere with feeding
  • A thorough oral history should be obtained from the patient regarding eating and drinking.
  • Bedside Swallow Assessment - no equipment involved and can be performed anywhere.  Patient should be observed while eating or drinking to determine if there is any visible choking, coughing or spilling.
  • Feeding recommendations will be based upon the findings.
Swallowing Study Findings:

MBS or Modified Barium Swallow study is used to determine patients ability to eat and drink without increased risk of complications due to aspiration.  A Speech Language Pathologist often performs with MBS.

The MBS findings in a Huntington's patient may reveal several problems:

  • Difficulty forming bolus due to decreased muscle tone of the oral mechanism.
  • Difficulty moving bolus due to an inability to control the tongue.
  • Delayed swallow trigger: cause unknown-- thought perhaps to be related to patients inability to initiate volitional movements.
  • Aspiration before/during and after the swallow.
  • Oral and pharyngeal incoordination.