Huntington's Disease

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Treatment

There is no cure for Huntington's disease. Treatment focuses on reducing symptoms, preventing complications, and providing support and assistance to the patient and those close to him or her.

Medication

Physicians often prescribe various medications to help control emotional and movement problems.

• Antipsychotics (hallucinations, delusions, violent outbursts): haloperidol, chlorpromazine, olanzapine (contraindicated if patient has dystonia)
  
• Antidepressants (depression, obsessive-compulsive behavior): fluoxetine, sertraline hydrochloride, nortriptyline
  
• Tranquilizers (anxiety, chorea): benzodiazepines, paroxetine, venlafaxin, beta-blockers
  
• Mood-stabilizers (mania, bipolar disorder): lithium, valproate, carbamazepine
  
• Botulinum toxin (dystonia, jaw clenching)
  

Because most drugs used to treat the symptoms of HD can produce undesirable side effects, ranging from fatigue to restlessness and hyperexcitability, physicians often prescribe the lowest possible dose.

Nutrition and Eating

Some Huntington's disease patients need a lot of time for meals because the loss of coordinated movement can make it difficult for them to swallow or feed themselves. These difficulties put them at risk for choking.

Food can be cut into small pieces, softened, or pureed to make swallowing easier. Swallowing therapy can help if started before there is serious difficulty. Dairy products should be avoided because they tend to increase the secretion of mucus, which can increase the risk for choking.

It is important for the patient to consume enough calories to maintain adequate body weight. The number of daily meals may have to be increased and vitamins and nutritional supplements may be recommended. If eating and dietary problems become severe, families and caregivers may need to consider the use of a feeding tube.

HD patients require large quantities of fluids, especially during hot weather, to avoid dehydration. Bendable straws can make drinking easier. In cases where the patient's muscular capability is severely weakened, water may have to be thickened with additives to the consistency of syrup before drinking is possible.

Complications such as constipation and incontinence can develop as a result of diet and lack of physical activity. A physician can provide dietary advice and information about how to cope with these problems.

Physical Activity

It is important for Huntington's disease patients to be as physically fit as their condition permits. Daily exercise promotes physical and mental well-being. Patients should walk as much as possible, even if assistance is necessary.

Because falls are always a risk, caregivers should keep the patient's surroundings free of hard, sharp objects. Wearing special padding during walks can help protect against injury from falls. Small weights worn around the ankles and sturdy, well-fitting shoes that slip on and off easily can help improve a patient's stability.

Social Activity

Unless and until the disease's progression prohibits it, people with HD should participate in outside activities, socialize, and pursue hobbies and interests. These activities also give family members and caregivers valuable time for themselves.

Support

Huntington's disease confronts patients and their caregivers with many complex problems that must be dealt with for years. While it may be emotionally difficult, it is important for patients and caregivers to make informed, carefully considered decisions regarding the future while the patient is capable of making his or her contribution to a planned course of action. Patients and their family members should discuss and consider issues such as legal concerns, home care, assisted care, and institutionalization.

Legal Affairs If possible, draw up wills and other important documents as early as possible to avoid legal problems later on, when the patient may be unable to represent his or her own interests. Legal assistance may be necessary if the patient encounters discrimination over insurance or employment.

Home Care Part-time help with housekeeping and physical care is often necessary. Federal, state, and local government programs and private agencies provide varying levels of domestic assistance, nutritional and nursing care, occupational therapy, and other home-based services.

Housing In some communities group housing facilities are available to persons who are alone and still independent, though not fully capable of providing for all routine needs, such as cooking and housekeeping. In these group residences, a resident attendant takes care of meals, housekeeping services, social activities, and local transportation needs.

Institutional Care The decision to institutionalize or place a family member in a congregate care facility can be enormously difficult. Professional counseling may be needed to help families deal with this important life choice.

Prognosis

Huntington's disease usually runs its full terminal course in 10 to 30 years. It has been observed that the earlier in life the symptoms of HD appear, the faster the disease progresses. The bedridden patient in the final stages of Huntington's disease often dies from complications such as heart failure or pneumonia.

Juvenile Huntington's disease runs it course comparatively fast, with death typically occurring in about 10 years.

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