Everyone can benefit from good nutrition and proper eating habits. For people with HD, good nutrition has been proven to be an important part of maintaining health and maximum functional ability. The purpose of this guide is to combine current dietary guidance for all people — such as reduction of calories, avoidance of trans fats, increased consumption of fruits, vegetables, and whole grains — with information about the special issues that affect nutrition in persons with HD and strategies to address these issues.
Research has shown that people with Huntington’s Disease often have a lower than average body weight for height, and may have higher than average calorie needs. This may be due to chorea, metabolic changes, or some other factor yet undiscovered. There is also some evidence that maintaining a body weight slightly above “desirable” weight will facilitate control of the disease. Therefore, people with HD should be encouraged to eat and every effort should be made to make eating enjoyable.
Many symptoms of HD can interfere with eating: reduced voluntary motor control, involuntary movements, problems with chewing and choking, as well as changes to cognition that may cause the individual to become distracted and overwhelmed by mealtime activity. Overcoming these challenges is an important part of maintaining good nutrition for the person with HD. As the disease progresses and other activities become limited, food and eating will take on even greater importance. The introduction of special utensils, dishes and modified seating, will help the person with HD continue to feed themselves as long as possible.
When it is no longer possible for the person with HD to meet his or her nutritional needs with an oral diet, enteral feedings (tube feeding) may be considered. Tube feedings may be given as a supplement to an oral diet, to provide extra fluids in case of swallowing difficulty, or as a sole means of nutritional support.
At-Risk Early Stage Brain Healthy Diet
Based on research literature for the general population, and other common neurological conditions, such as dementia, there are some dietary factors considered to be “brain healthy”.
Three of the most important dietary factors in a brain-healthy diet are vitamin B-12 anti-oxidants and anti-inflammatory agents. There are many foods that provide these substances, so you can take your pick of these foods to incorporate into your diet. Try to include at least one at every meal. Vitamin B12
Vitamin B12 is found in animal foods (meat, dairy, eggs, poultry, etc.). B12 keeps the body’s nerve and blood cells healthy and helps make DNA. Studies have shown that prolonged deficiency of this vitamin may have neurological effects on the brain and can cause nerve damage, although these effects are not specific to HD. Most people in the US get enough B12 if they include animal foods in their diet. Antioxidants
Antioxidants protect your cells from free radicals (“bad” cells) in the body. COLOR is important when choosing foods with antioxidant properties – foods with deep, rich color tend to be higher in antioxidants. Choose a variety of fruits and vegetables to get the most benefit. These nutrients are good for everyone, not just someone with HD. More research is required to determine whether there is a specific increase of antioxidants needed for people with HD. Essential Fatty Acids- Omega 3 & Healthy Fats
Omega 3 fatty acids are helpful in reducing inflammation throughout the body. They also can reduce triglycerides (and have a blood thinning effect so check with your doctor before taking a supplement). Other healthy fats include olive oil, nut butters, and avocados.
Early / Mid Stage HD Speech & Language Therapy
Early referral to speech and language therapy is important. In early-stage HD, a person may have no issues swallowing, but speech and language therapists may still have a role in evaluating an individual’s baseline state, and providing information for the future.
HD affects individuals differently, so regular assessment is required to help an individual maintain function. There is significant overlap in feeding and swallowing issues in the mid and late stages. As the disease progresses the challenge of maintaining adequate nutrition and hydration becomes greater. Click here to find a speech therapist in your area.
Late Stage HD Tube Feeding
Feeding tubes are usually recommended when a person is no longer able to take in adequate amounts of nutrients by mouth to maintain their weight at a healthy point. Ideally this should be decided while the person is still able to consider the pros and cons for him/herself, and well in advance of the need for tube feeding. Often, having liquids and formula feedings via tube the pressure of meeting an individual’s calorie needs.There are several ways tube feeding is administered:
- Continuous: Running twenty four hours a day, every day
- Intermittent / Cycled: Running only part of the day (cycled overnight or running for 12 hours for example)
- Bolus: Bolus is given either via syringe or gravity (drip without a pump) — at meal times typically
- Supplemental: This could be bolus or intermittent — this might be given in addition to eating if unable to eat adequate calories (but it could be done by any of the above methods)
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