Nutrition for People with Huntington's Disease

Introduction | Resources

By Renette Davis with assistance from people on the Mailing List for Huntington's Disease


Dysphagia is the most common cause of death in HD, either directly from suffocation or aspiration, or indirectly from starvation.

(From A Physician's Guide to the Management of Huntington's Disease by Neal G. Ranen, M.D., Carol E. Peyser, M.D., and Susan E. Folstein, M.D., published 1993 by the Huntington's Disease Society of America, p. 24.)

Dysphagia means difficulty in swallowing. According to A Physician's Guide to the Management of Huntington's Disease dysphagia in Huntington's Disease appears to result from "difficulty with closing the mouth and chewing, mucus formation, choking on liquids, food gulping, difficulty with coordinating the sequence of swallowing, difficulty clearing the mouth of excess food after each swallow, and the unexpected inspiration of air."

A new pamphlet entitled Huntington's Disease, published in 1996 by the Huntington's Disease Society of America, says on p. 17, "Nutrition is important in everyone's life, but takes on added significance in HD. People with HD require an unusually high number of calories to maintain their body weight. Maintaining, or even gaining, weight can help reduce involuntary movements and other symptoms, particularly in the later stages of HD."

For this reason, we are trying to gather together cookbooks, recipes, ideas for finger foods, etc. for people with Huntington's Disease. We welcome suggestions from anyone who has experience with Huntington's Disease or with dysphagia. Send your suggestions to Renette Davis by clicking here.

Resources for Providing Nutrition to People with Huntington's Disease

Note: Be sure to take the person who has Huntington's Disease to see someone who specializes in swallowing problems (probably a speech language pathologist) and have a Videofluoroscopic Swallow Study (VFSS) done before trying out any of these resources. Everyone is different and depending on where or at what point during the swallow things go wrong, it may not be safe to use these resources, or there may be other resources that are more effective.

This page developed and maintainted by Renette Davis. Send comments for Renette to her by clicking here.

Last updated: Aug. 13, 2011