At-Risk/ Early Stage HD

Early/Mid Stage HD

Late-Stage HD

Helpful tools for an HD kitchen

Tips to maintain food intake

Tips to increase calories

HDSA Resources

Other Resources

Feedback

 

Disclaimer: The information provided below is for informational use only. HDSA encourages all attendees to consult with their primary care provider, neurologist or other healthcare provider about any advice, exercise, medication, treatment, nutritional supplement or regimen that may have been mentioned.

 

At-Risk/ Early Stage HD

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.

 

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 to do tube feeding:

Continuous – running 24/7

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)

 

Helpful tools for an HD kitchen

Having the right equipment can make preparing and serving meals for the person with HD much easier.

A blender and/or food processor can be very helpful in preparing shakes, soups and sauces, and for pureeing favorite foods when a very soft consistency is needed. It is helpful to find one with multiple containers to allow for preparation of several foods quickly.

A juicer can be useful for a person with dental problems, who cannot chew fruits and vegetables as well. If swallowing is also a problem, try adding thickening powder or mix the juice into a thick shake or soup for a nutritional boost.

A cappuccino maker may seem like a luxury, but switching from regular coffee to cappuccino made with whole milk and added cream (or vanilla ice cream!) can add some needed calories.

A pastry cutter or potato masher can serve many purposes in mixing and mashing foods and are helpful for adding “extras” like butter or sour cream to a dish.

Dishes with extended sides, also called “soup plates” or “pasta dishes” can help make clean up easier.

Sports cups with a cover and straw attached can be helpful in preventing spills.

Spoons and forks with larger handles can make picking up food easier. Rubber sleeves to slip onto the handles of your current tableware are also available

A heated baby dish can be used as a warming tray to keep food warm throughout a meal for a slow eater.

 

Tips to maintain food intake

  1. 1.  Eat smaller, more frequent meals (i.e.: 6 instead of 3 times a day).

  2. 2.  Eat favorite foods in a relaxed, pleasant atmosphere.

  3. 3.  Keep snacks available at all times, such as candy, cheese, cookies, ice cream, sandwiches, or mini-pizzas.

  4. 4.  Use other cues to remind yourself to eat, such as a clock with a timer, a beeping wristwatch, or the commercial breaks on television.

  5. 5.  Avoid drinking liquids with meals because you will fill up too quickly and not have enough room for the food.

  6. 6.  If you drink a supplement or shake, drink it between meals.

  7. 7.  Avoid drinking beverages without calories (i.e.: diet soda, seltzer).

  8. 8.  If you drink coffee or tea, add sugar and whole milk or cream for extra calories.  Or, try a cafe latte or chai tea.

 

Tips to increase calories

  1. 1.  Use cream, whole milk, evaporated milk, or condensed milk instead of low fat or skim milk.

  2. 2.  Add cheese, sour cream, butter, margarine, or oil to vegetables.

  3. 3.  Add avocado to salads or top with creamy-style dressings.

  4. 4.  Add cream or butter and sugar to cereal.

  5. 5.  Scoop ice cream over fruit, cake, pie, or waffles.

  6. 6.  Add extra mayonnaise to tuna, egg, or chicken salad.

  7. 7.  Try cream cheese or peanut butter on crackers, bagels, fruit, or carrot sticks.

  8. 8.  Add coconut cream to shakes or main dishes for extra calories and a tropical taste.

  9. 9.  Sauces and gravies add calories to meat and potatoes.

 

HDSA Resources

HDSA Family Guide Series: Nutrition and HD

Caregiver’s Corner Webinar: HD & Nutrition

In the Thick of It: What you Need to Know about Thickened Liquids, by Ann Gaba, We Are HDSA, June 2013

 We Are HDSA Nutrition & HD Issue, February 2012

Ask the Expert: Food away from Home, by Ann Gaba, We Are HDSA, May 2011

Nutrition intervention in HD by Susan Sandler

Strategies for Speaking and Eating with HD, by Jeanne E. Thomson, The Marker, Spring 2001

A Caregiver’s Handbook for Advanced Stage HD

HDSA Family Guide Series: Speech and Swallowing (COMING SOON)

 

Other Resources

EHDN Guidelines

Nutritional Management of Individuals with Huntington’s disease: Nutritional Guidelines

Guideline for Oral Healthcare for individuals with Huntington’s disease

Selected High Calorie Recipes from the HDSA Center of Excellence at Columbia University

Managing Swallowing Difficulties Associated with HD

 

Feedback

Please share your feedback about this section of the HDSA website by contacting Jane Kogan at jkogan@hdsa.org