Living With Huntington’s Disease

Huntington’s disease is an incurable genetic condition, marked by uncontrollable and jerky movements known as chorea, as well as cognitive, behavioral, and emotional changes. This disease and its symptoms typically begin in adulthood and worsen over time, but can be more manageable with certain adjustments and therapy approaches.

Movement issues

Symptoms of chorea occur unpredictably in the hands, feet, and face, affecting a person’s ability to carry out such daily life activities as eating, dressing, writing, and driving.

Movement issues are often managed by medications such as Xenazine (tetrabenazine), and with physical and occupational therapy. Precautions such as non-slip mats and handrails in the bathroom can also help to prevent falls.

Problems with movement may also affect patients’ sexual lives. When one partner has Huntington’s, couples may need to experiment and be creative in finding positions that work and alternative ways of sharing intimate moments. A sex therapist can help couples work through issues in their sexual lives.

Cognitive changes

Patients with Huntington’s disease may find it challenging to remember the content of conversations, or things they have watched on TV or read in a book. Navigation can also be difficult, with patients at risk of getting lost even in familiar places. This disease often affects a person’s ability to plan, make decisions, and process complex topics.

But patients usually retain past memories, and are able to recognize people, objects, letters, numbers, and colors. They are often able to continue carrying out jobs that they have previously been doing for many years.

Mood and behavioral changes

It is not uncommon for Huntington’s patients to display disinhibited behaviors, ranging from speaking out of turn to inappropriate sexual overtures. Agitation, irritability, and aggression are other possible personality changes. Some patients may experience hallucinations and delusions that can severely affect their day-to-day interactions.

Living with Huntington’s can induce feelings of anxiety, depression, apathy, and frustration. Such emotions may occur as the result of the diagnosis, or develop over time as a consequence of the disease process in the brain.

These symptoms may be treated with counseling, psychotherapy, and medications such as antipsychotics and antidepressants.

Communication issues

Patients with Huntington’s may experience changes in the tone and quality of their voice, especially with diminishing control over muscles of the throat (dysarthria). Their voice may become more hoarse or slurred, and they may speak too slowly or too quickly. Speech therapy can help, as can communication aids such as cards and charts or Talking Mats (another visual way of communicating or giving reminders).


People with Huntington’s have higher-than-usual energy needs because of their constant movement. Special diets consisting of high-calorie foods can help ensure that patients remain adequately nourished.

It is important not to overlook dental health in patients, as calorie-dense foods are often sugary and movement problems may making proper brushing of teeth difficult.

Changes in control of throat muscles can cause difficulties swallowing, a problem that worsens as the disease progresses. Patients should be moved to softer foods to reduce their risk of choking at later stages of the disease. Tube feeding may be necessary for patients with advanced disease who are no longer able to eat on their own.

Support systems

Huntington’s is a disease that affects not just the patient, but entire families. Several support groups, such as the Huntington’s Disease Society of America and the International Huntington Association,  can provide information as well as mental and physical support of considerable benefit to patients, their family, and caregivers.


Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.