Research Frontiers
Part 1

Caring for HD

The Center consists of a team of specialists, including several neurologists, a neuropsychiatrist, a social worker, a genetic counselor, and an occupational therapist. It is important that they approach their patients as a team because of the complicated nature of HD; people with HD often have several distinct medical complications that require specialized attention. For example, a neurologist may be able to help with choreonic (jerky, uncontrollable) movements, while a psychiatrist or licensed clinical social worker can assist in coping with potential psychological issues. A patient may also want to talk to a genetic counselor if he or she is considering having children. No single person is qualified to deal with all the facets of this disease. Consequently, it is best to approach and treat people with HD using a team of specialists who work together.

Melinda Kavanaugh, the Center’s social worker, met with Taub and Hou to explain how things work at Washington University. The team sees patients every Wednesday. Since the Center is located in the Movement Disorders section of the Department of Neurology, the team sees not only people with HD, but also people who have other diseases resulting in motor problems. Overall, the team sees about 2 to 8 people with HD each week. When patients come in, they first see Melinda to undergo cognitive testing using the Unified Huntington’s Disease Rating Scale (UHDRS).

Above: Social worker Melinda Kavanaugh next to the UHDRS computer.

Melinda made an important observation that is perhaps overlooked by the general population: “Primarily, I think this is a psychiatric disorder.” She explained that, most of the time, people with HD are not even aware of the erratic movements that they have. Instead, the things about the disease that bother them most include changes in mood, depression, the inability to control anger, and the frustrations arising from not being able to work. Because patients seem to be bothered most by mental as opposed to physical problems, the Center team focuses primarily on psychiatric and psychosocial aspects of HD. (Psychosocial is just what it sounds like; it involves how psychological aspects can affect social aspects of one’s life and vice-versa.) Rather than treating the movements right away, which they feel has historically been a huge mistake, the team instead focuses on family involvement, communication, and starting a chain of advocacy. They emphasize the importance of establishing good communication to prevent divorce and abandonment, which occur when family members do not understand their loved ones’ condition.

After seeing Melinda, the patients see Dr. Tabbal, a neurologist, for evaluations and referrals to occupational, physical, and speech therapists. Because HD can have a profound effect on a person, team members always recommend that their patients see a general therapist as well.

Last Modified: 02/06/2005

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