Maintaining optimal nutrition may be difficult for the person with Huntington's disease, particularly as the disease progresses. The disease involves chorea (jerky involuntary movements), difficulty swallowing, and psychological problems, all of which can make eating a challenge. In addition, because of their constant muscle activity, people with Huntington's disease require more calories to maintain their body weight. They are also at an increased risk for aspiration and suffocation due to difficulties with swallowing.
The individual with
will most likely want to maintain his or her independence in eating. However, as the disease progresses, he or she will become more dependent on others. If you are responsible for the nutritional care of a person with Huntington’s disease, the following tips can help. Registered dietitians, speech-language pathologists, and occupational therapists can provide additional help.
In the Early Stages
Decreased eating or changes in eating habits, possibly as a result of
Be aware that depression may develop as the person struggles to
accept the diagnosis.
Psychological care should be sought from a therapist who is
familiar with Huntington's disease.
The person has food cravings, particularly for
high carbohydrate foods.
There is little need to worry about food cravings, as long as
the individual eats a well-balanced diet.
A multivitamin and mineral supplement that meets 100% of the
RDA may be beneficial.
In the Middle Stages
Difficulty swallowing; choking
Avoid eating when tired or upset.
Sit upright during all meals, snacks, and drinks.
Try to avoid foods that cause coughing, choking, or throat
irritation. These may be foods that are dry, crumbly (chips, dry
cereal), acidic (such as citrus fruit/juice, tomatoes/juice), spicy
(chili powder, red and black pepper, curry powder), or stringy
Avoid talking while eating or swallowing.
Blend and puree foods.
Add sauces, gravies, liquid dressings and moist toppings (such
as sour cream, butter, mayonnaise) to foods.
Choose foods that are soft and moist such as yogurt, pudding,
scrambled eggs, mashed potatoes, macaroni and cheese, oatmeal,
gelatin, milk shakes, frozen yogurt, or ice cream.
Buy a commercial thickener to thicken liquids. Liquids with a
milkshake consistency are easier to swallow.
Cut food into small pieces, take small bites (½ teaspoon or
less), and chew well.
Between bites of food, sip a beverage.
Use a straw.
Make your own vegetable and fruit juices.
Stay seated upright for at least 30 minutes after eating.
Jerky movements (chorea) and poor coordination
make eating slow and messy.
Use cups with covers and straws, such as sports cups, to
Get forks and spoons with rubber handles or larger handles for
Invest in some soup plates (bowls with attached plates), and
pasta dishes, which can be placed on plates.
For the slow eater, use a warming tray to keep food warm.
Use bibs, aprons, and moisture-resistant table covers.
Increased caloric needs
Have more high-fat, high calorie foods such as:
Sauces (creamed or cheese) and gravies
Creamed soups and bisques
Plain, whipped, or sour cream
Icecream (without chips, nuts, or chunks)
Mayonnaise (add to sandwiches, salads)
Butter (add to vegetables, pancakes, and hot cereals)
Smooth peanut butter or other smooth nut butters
Full-fat salad dressings
Avocados in guacamole dip, sliced in salads, or as a side
Full fat milk or yogurt
Soft cheeses, cheese spreads, dips, or sauces
The individual becomes distracted or upset
Eliminate possible distractions such as the TV and radio.
Avoid arguments or discussions that may be upsetting.
Provide a pleasant and relaxing setting with adequate lighting,
attractively arranged food and decor, and a comfortable sitting
Be flexible and consider the changing needs of the person with
In the Advanced Stages
As the individual's condition deteriorates, he or she will
depend on a family member or other caregivers for feeding.
Caregivers with patience, sensitivity, and a sense of humor tend to
find the experience enjoyable and loving rather than stressful.
When eating becomes extremely difficult, tube feeding is an
option. Family members and other caregivers may be trained to
provide tube feeding at home.
Please be aware that this information is provided to supplement the care
provided by your physician. It is neither intended nor implied to be a
substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER
IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the
advice of your physician or other qualified health provider prior to
starting any new treatment or with any questions you may have regarding a