Self-management

Lifestyle and home remedies

Managing Huntington's disease is demanding on the person with the disorder, family members and other in-home caregivers. As the disease progresses, the person will become more dependent on caregivers. A number of issues will need to be addressed, and strategies to cope with them will evolve.

Eating and nutrition

Factors regarding eating and nutrition include the following:

  • People with Huntington's disease often have difficulty maintaining a healthy body weight. Difficulty eating, higher caloric needs due to physical exertion or unknown metabolic problems may be the cause. To get adequate nutrition, more than three meals a day or the use of dietary supplements may be necessary.
  • Difficulty with chewing, swallowing and fine motor skills can limit the amount of food you eat and increase the risk of choking. Problems may be minimized by removing distractions during a meal and selecting foods that are easier to eat. Utensils designed for people with limited fine motor skills and covered cups with straws or drinking spouts also can help.

Eventually, a person with Huntington's disease will need assistance with eating and drinking.

Managing cognitive and psychiatric disorders

Family and caregivers can help create an environment that may help a person with Huntington's disease avoid stressors and manage cognitive and behavioral challenges. These strategies include:

  • Using calendars and schedules to help keep a regular routine
  • Initiating tasks with reminders or assistance
  • Prioritizing or organizing work or activities
  • Breaking down tasks into manageable steps
  • Creating an environment that is as calm, simple and structured as possible
  • Identifying and avoiding stressors that can trigger outbursts, irritability, depression or other problems
  • For school-age children or adolescents, consulting with school staff to develop an appropriate individual education plan
  • Providing opportunities for the person to maintain social interactions and friendships as much as possible

Coping and support

A number of strategies may help people with Huntington's disease and their families cope with the challenges of the disease.

Support services

Support services for people with Huntington's disease and families include the following:

  • Nonprofit agencies, such as the Huntington's Disease Society of America, provide caregiver education, referrals to outside services, and support groups for people with the disease and caregivers.
  • Local and state health or social service agencies may provide daytime care for people with the disease, meal assistance programs or respite for caregivers.

Planning for residential and end-of-life care

Because Huntington's disease causes the progressive loss of function and death, it's important to anticipate care that will be needed in the advanced stages of the disease and near the end of life. Early discussions about this type of care enable the person with Huntington's disease to be engaged in these decisions and to communicate his or her preferences for care.

Creating legal documents that define end-of-life care can be beneficial to everyone. They empower the person with the disease, and they may help family members avoid conflict late in the disease progression. Your doctor can offer advice on the benefits and drawbacks of care options at a time when all choices can be carefully considered.

Matters that may need to be addressed include:

  • Care facilities. Care in the advanced stages of the disease will likely require in-home nursing care or care in an assisted living facility or nursing home.
  • Hospice care. Hospice services provide care at the end of life that helps a person approach death with as little discomfort as possible. This care also provides support and education to the family to help them understand the process of dying.
  • Living wills. Living wills are legal documents that enable a person to spell out care preferences when he or she isn't able to make decisions. For example, these directions might indicate whether or not the person wants life-sustaining interventions or aggressive treatment of an infection.
  • Advance directives. These legal documents enable you to identify one or more people to make decisions on your behalf. You may create an advance directive for medical decisions or financial matters.

Prevention

People with a known family history of Huntington's disease are understandably concerned about whether they may pass the Huntington gene on to their children. These people may consider genetic testing and family planning options.

If an at-risk parent is considering genetic testing, it can be helpful to meet with a genetic counselor. A genetic counselor will discuss the potential risks of a positive test result, which would indicate the parent will develop the disease. Also, couples will need to make additional choices about whether to have children or to consider alternatives, such as prenatal testing for the gene or in vitro fertilization with donor sperm or eggs.

Another option for couples is in vitro fertilization and preimplantation genetic diagnosis. In this process, eggs are removed from the ovaries and fertilized with the father's sperm in a laboratory. The embryos are tested for presence of the Huntington gene, and only those testing negative for the Huntington gene are implanted in the mother's uterus.