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 Huntington's disease 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.
Problem: Decreased eating or changes in eating habits, possibly as a result of depression
Tips:
Problem: The person has food cravings, particularly for high carbohydrate foods.
Tips:
Problem: Difficulty swallowing; choking
Tips:
Problem: Jerky movements (chorea) and poor coordination make eating slow and messy.
Tips:
Problem: Increased caloric needs
Tips:
Problem: The individual becomes distracted or upset during mealtimes.
Tips:
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.
RESOURCES:
Hereditary Disease Foundation
http://www.hdfoundation.org
The Huntington Disease Society of America
http://www.hdsa.org
International Huntington Association
http://www.huntington-assoc.com
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov
CANADIAN RESOURCES:
Canadian Association of Family Physicians
http://www.cfpc.ca/
Huntington Society if Canada
http://www.huntingtonsociety.ca/english/index.asp
Last reviewed January 2009 by Rimas Lukas, MD
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 medical condition.
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