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Huntington's Disease: A Caregiver's Guide

Because Huntington’s disease is progressive, the symptoms exacerbate as the disease advances. Late stage symptoms of the disease include dystonia, sustained abnormal postures that include facial grimaces, twisted neck and arched back; chorea or choreoathetosis, a condition in which involuntary movements like jerking, twisting and writhing become more pronounced; a slowness of voluntary movements to include abnormal eye movements and gait disturbances; an inability to regulate the speed or force of movements; an inability to initiate movement; slowed reactions; difficulty speaking and swallowing due to involvement of the throat muscles; localized or generalized weakness and impaired balance ability; and rigidity. In most patients, chorea peaks and then declines while rigidity and slowness in movement may become more significant. Rigidity and spasticity are late stage problems that can affect gait, lead to falls and eventually lead to the need for a wheelchair. While an enumeration of these complications paints a bleak picture and must illustrate the feeling of helplessness faced by caregivers, it is important for others to understand not only what the patient is living but what their caregivers face daily.

There is great reason for hope in combating Huntington’s, however. Since 1991, Columbia University’s HDSA Center for Excellence has been working tirelessly to provide help to those who have the disease (www.hdny.org). And recently, Sirna Therapeutics and the University of Iowa announced groundbreaking results in a preclinical study for the treatment of Huntington’s disease through RNA Interference Therapy. One day at a time, with the help of people who care and want to find answers, through the courage of those living with the disease and because of the 24/7 dedication of caregivers, there will be answers. Those who live it know that Huntington’s disease does not have to have the last word. It can be a statement of victory from those who learn in each moment to overcome overwhelming odds.

Helpful Hints for CaregiversThe diet for people living with Huntington’s disease should be high in protein and carbohydrates. If the person is underweight, a minimum of 3000 calories a day might be required and is best administered in smaller, more frequent meals instead of three large meals. Constant movements burn many calories and the resulting increased hunger can be met with eggnog, Carnation Instant Breakfast or milk. 

Multivitamins are important as are vitamins B complex, C and E. 

People with Huntington's should avoid junk foods, highly fried foods and alcoholic beverages.

Plastic dishes and large, plastic utensils are helpful – the dishes help prevent breakage, and the utensils are easier for patients to hold.

Fill cups of liquid only halfway full to prevent spillage. Flexible straws are helpful.
Let your loved one dress him - or herself. Choose easy to wear clothing, replacing buttons and zippers with snaps and Velcro fasteners. Replacing the small, flat tabs of zippers with a large plastic ring will help the patient when dressing. Avoid belts, choosing suspenders instead, and avoid ties. Slip-on loafers with rubber soles are great shoe choices.

Don’t let your loved one withdraw. Keep him or her occupied to help prevent depression and social isolation.

Stay positive with your communication. Let the patient know if you don’t understand something. Learn the patient’s vocabulary. Encourage your loved one to use word or picture cards. Before speech deteriorates, establish a definite yes/no response like the blinking of an eye or the nodding of a head.
Accept the person as he or she is. Be understanding and relaxed.

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