Maintaining a balanced diet that provides the necessary vitamins and nutrients for your body is a good rule of thumb for everyone. But it’s a particularly important aspect of life for people with Huntington’s disease.
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Huntington’s disease is a genetic disease in which mutated genes create an unusually long protein that attacks and kills brain cells. This leads to uncontrollable movements of the hands, feet, and face that worsen over time, affecting walking, speaking, and even the ability to swallow.
The symptoms of Huntington’s disease create a ripple effect that impacts all aspects of a person’s life, including nutrition. To better understand these dietary and nutritional needs, we spoke with registered dietitian Nicole Hopsecger, RD.
How does Huntington’s disease affect nutrition?
The main way Huntington’s disease affects nutrition, Hopsecger says, is through typical Huntington’s symptoms. “These symptoms can affect a person’s ability to eat, potentially leading to malnutrition and weight loss,” she says.
- chorea: This is a movement disorder that causes involuntary, irregular and unpredictable muscle movements, which can make it difficult for a person to prepare food or eat properly. “Chorea is thought to burn extra energy, requiring more nutrition for a patient to maintain weight,” says Hopsecger. “If someone needs that extra nutrition but has difficulty eating, that can also create a significant energy deficit.”
- Dysphagia: This is a difficulty in swallowing, which can sometimes be affected by chorea. In addition to causing pain, it can also reduce a person’s food intake due to fear of choking, cause them to avoid hard-to-swallow foods, and increase the time it takes them to eat.
- Psychological changes“Cognitive changes and the onset of dementia can cause a person to forget meals or create difficulty when trying to learn new ways to eat,” says Hopsecger.
Chorea and dysphagia can also increase the risk of choking for people with Huntington’s disease, whether it’s causing a person to swallow too soon or inducing a spasm in the diaphragm (chest) , which could lead to aspiration (when food or drink ends up in the lungs instead of the stomach). This, in turn, can lead to aspiration pneumonia.
What changes might people with Huntington’s disease face?
Some changes or approaches to nutrition for someone with Huntington’s disease depend on what stage of the disease they are in.
“In the beginning, it’s important for them to eat a well-balanced diet to keep their weight stable,” says Hopsecger.
The Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) diet has been associated with slower cognitive decline in general population studies, which may be worth looking into. But, Hopsecger notes that there’s little research on the diet and its effects on people with Huntington’s disease, so it’s unclear if it has similar effects in this setting.
At this stage of Huntington’s disease, a person is likely beginning to experience increased difficulty swallowing, although this problem varies from person to person. While maintaining a balanced diet is important, adjusting food choices can also make a big difference for people with Huntington’s disease.
“Changing the consistency of the diet may help in light of this dysphagia,” recommends Hopsecger. “Liquids can be thickened. Food can be moistened, cut into small pieces or even pureed to make swallowing easier and safer for the patient.
Again, the severity of a person’s condition will vary on a case-by-case basis, but people with advanced Huntington’s disease may need advanced help with feeding. Whether it’s getting help from someone during feeding or, in more dramatic circumstances, having a feeding tube, it’s essential to ensure that these nutrients and vitamins important are included in the meals.
Suggested foods for people with Huntington’s disease
People with Huntington’s disease will need to make different nutritional choices because of the conditions associated with the disease. Talking with a primary health care provider and dietitian is the best way to find a personalized diet that will work best for someone with Huntington’s disease.
Add extra calories
A well-balanced diet is essential for overall health, but someone with Huntington’s disease may have additional caloric needs. “A person with Huntington’s disease may need more calories than an average person due to chorea and other potential metabolic factors,” says Hopsecger.
Healthy fats are a good source for those calories, Hopsecger says. They can help increase the number of calories consumed to help balance the consumption of small amounts of food. Examples include:
People with Huntington’s disease are at risk of losing weight due to excess energy use and being less likely to be able to perform physical activities. Unintentional weight loss (losing weight without trying) can lead to loss of muscle mass. Although muscle loss in this scenario is not entirely preventable, a high protein diet will help ensure that there is no muscle loss due to nutrient deficits.
“Foods that meet those energy and protein needs are really important for people with Huntington’s disease,” says Hopsecger. “The brain is fed first. If the diet does not provide enough energy to the brain and the rest of the body, the fatty tissues are broken down into energy. Once fat stores are depleted, the body breaks down muscle tissue into energy. It is because of this metabolic process that it is important to meet energy and protein needs.
Here are some examples of high-protein foods:
- Fish and other seafood.
- Lean red meat.
keep things sweet
Again, due to swallowing difficulties, soft, moist foods like canned fruits, smoothies, yogurts, oatmeal, and casseroles are good ways to pack in all of those fundamental nutrients, especially with fruits and vegetables.
Foods to Avoid for Huntington’s Disease
With Huntington’s disease, there is concern about the consistency of foods (such as thick, chunky, rough, or dry foods). “People with Huntington’s disease should avoid foods that put them at risk of aspiration (sucking food into their airways) or exacerbating (worsening) other swallowing difficulties,” says Hopsecger.
These foods include:
- Raw fruit.
- Stringy vegetables.
- Hard and crispy breads.
- Tough and dry meats.
- Dried fruit.
For someone with Huntington’s disease, diet and nutrition may need to be individualized, and meeting with a speech-language pathologist and dietitian is the best way to make these changes.
Other tips for maintaining good nutrition with Huntington’s disease
Eating smaller, more frequent meals can be a key way to maintain nutrition with Huntington’s disease. “It can help manage a lack of appetite or fatigue that can set in with longer meals and swallowing issues,” advises Hopsecger.
A nutritional supplement, such as a protein shake, could also be an option to add to meals or take between meals, she suggests. Just be sure to consult your health care provider and a dietitian for more information on what might work best.
Hopsecger cautions to avoid filling up with fluids, however, by drinking between meals.
Finally, consider using high-calorie foods with meals and snacks. For example, using whole milk or cream with cereal or melting margarine or cheese over cooked vegetables. It not only keeps food soft, but also provides the balance of calories alongside the nutrients that people with Huntington’s disease need.
Tools and dishes to use
People with Huntington’s disease may consider using different dishes and kitchen utensils to meet their particular needs.
- Blender or food processor for making protein shakes and pureeing food for easier consumption.
- Dishes with higher sides to allow more food to get onto utensils.
- Utensils with large handles for easier handling.
- Sports cups to prevent spills.
Huntington’s disease can prevent many challenges to maintaining good nutrition. But using these tools, along with following suggestions for healthy balanced foods with extra calories, can improve the quality of life for people with Huntington’s disease.