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Huntington's Disease Caregiving

Nutrition Information for the Care Giver
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As primary care givers, you are the eyes and ears that will notice the changes that happen with Huntington's patients first. It is important that you are aware that HD is not a stagnant disease, but one that continually changes and deteriorates. Everyone with HD is not the same and these changes occur at different times and at different rates with no predictability. Knowing this and a few other key things about HD will help you best care for your patient.
 
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Several issues make maintaining adequate nutrition a difficult, sometimes cumbersome problem for the person with HD. Huntington's is unique for the fact that the person's metabolism is in a hypermetabolic state. Appetites are usually voracious. Calories are burned faster then they can be replaced making it difficult to maintain weight without a concerted effort. Eating takes longer because of co-ordination problems and the need for extra care to avoid choking. Supervision is needed to ensure that food is prepared appropriately and that the person with HD doesn't forget to eat.

Weight maintenance is very important to the health and well being of the HD patient. General good nutrition is recommended in the early stages of HD to ensure adequate intake of all nutrients. Modified diets such as low fat, low cholesterol or diets that restrict calories are not appropriate.

A full nutrition assessment with particular attention to weight and swallowing are necessary to provide adequate calories and appropriate textures of food and fluids. As the disease progresses, these issues are continually re-evaluated and adjustments to the diet are made to ensure safe adequate oral intake for the longest time possible.

Goal weights are set for 15-20 pounds above ideal body weight. This is done for several reasons. The most important being that our patients seem to do better with a little more weight on them. Their movements appear to be less pronounced, they seem to feel better in general which improves their mood and they also have a bit of a cushion should they become ill.
 
Weight loss is an indicator that the patient isn't doing well and maintaining this weight gets to be a trick as HD progresses.

It is preferred that the patient get their calories from the foods they eat for as long as possible and then add supplements when it becomes necessary. A high-calorie high-protein diet will help get the extra calories in. Using whole milk and adding butter, margarine, cream, sour cream, mayonnaise, gravies and sauces to foods can do this. The addition of snacks such as pudding, ice cream and milk shakes as well as letting the patient eat whenever they are hungry will help as well.

There is a tendency with HD patients to eat very quickly, to over stuff their mouths and to talk while they are eating. All these thing can lead to potential choking problems. Mechanical issues of disco-ordination of the mouth, tongue and muscles used for swallowing can also be contributing factors to swallowing problems.

The best way to determine where the problem lies and the appropriate textures of solids and liquids is to have a modified batrium swallow study done along with a consult with a Speech Pathologist.

Other tips to help make the eating environment safer for a person with Huntington's include:

A quiet atmosphere where eating and talking won't compete.

* Encourage small bites and sips.

* Use a straw or a covered cup for beverages.

* Avoid foods that are dry and sticky.

* Always eat in an upright position.

* Allow the person with HD to be as independent as possible.

Being aware is the key. It helps to take the stress and frustration out of the eating environment. It will make you a better observer allowing you to notice changes and to make corrections quickly that will keep your patient as safe as possible while eating.