Treatment Considerations

There is never “nothing” that can be done for a patient with Huntington’s Disease!

Management of symptoms of Huntington’s Disease is not as good as we would like it to be, but can make a big difference in the quality of life of the affected individuals and family members. In general, it is important to:

  1. Create a health care team that can help you with the complex decision-making that is involved in the successful management of Huntington’s Disease. Your health care team would optimally include a:
    • Primary care physician or qualified physician extender (FNP, PA)
    • Neurologist with experience with movement disorders
    • Psychiatrist, neuropsychiatrist, geriatric psychiatrist, or consult-liaison psychiatrist
    • Therapist, either psychologist, LCSW or certified counselor
    • Ancillary professionals as referred by your team leader

    NC-CCHD clinicians are willing to collaborate with your community providers, and welcome their questions or referrals.

  2. Choose your health care team before a crisis arises or before emergency needs demand medical care. It is better to “check out” a provider when things are going well, to be certain that your ability to communicate with your provider matches your expectations.

  3. Use medication to achieve specific treatment goals aimed at improving quality of life. Always discuss risks and benefits with your physician. If at all possible, change only one medication at a time. If a person has trouble with a specific symptom, like depressed mood or obsessions, chart symptoms and monitor improvement and resolution. Find the lowest dose of medication, which provides an acceptable level of symptom control balanced with side effects. Never stop a medication without informing the prescribing physician, as some medications must be tapered off and not abruptly stopped. Always inform all of your physicians of the medications you are taking. (Drug Treatment for HD link: HD drug works: http://hddrugworks.org/)

  4. Try non-pharmacologic (environmental) interventions too. They may take some time before they are effective, but are a key component to successful management. (Links: http://huntingtondisease.tripod.com/understandingbehaviour/ and http://nc-cchd.org/behavior.html

Risky Health Behaviors

Risky health behavior complicate Huntington’s Disease, affect the safety of the patient and others, reduce quality of life, and interfere with the interpretation of medication effectiveness. These behaviors may include:

  • Alcohol intake
  • Use of mind alterning drugs
  • Narcotic use
  • Smoking
  • Driving when told it is not safe to do so
  • Not using seat belts
  • Gambling
  • Unprotected sex with unknown or little known individuals
  • Missing doctor’s appointments
  • Avoiding medical care
  • Not taking medicine as prescribed
  • Avoiding dental care

We recommend that you search for information about treatment from reputable sources. In an age of instant information by news media and the internet, accounts of individuals with Huntington’s Disease and their treatment may be entirely anecdotal, and therefore colored by personal perception and false interpretation. Huntington’s Disease is hard enough without inaccurate information and false hope. This underpins our recommendation that you seek out and create a treatment relationship with a physician and medical team that you trust will only share with you information within the scope of their training and experience, and reflects currently accepted practice.

We have made every attempt to include website links that we believe are created by leaders in the treatment, genetics, and research of Huntington’s Disease. We cannot, however, endorse any treatments described on these sites. Efforts are underway to achieve consensus about the treatment of symptoms of Huntington’s Disease. As treatment guidelines become available, they will included on this website. In the meantime, we recommend that treatment decisions are based on personal treatment goals with a trusted clinician with experience in the care of Huntington’s Disease, or a physician who can work in conjunction with a HD specialist.

Participation in research can be considered a form of medical treatment. Please see Dr. Francis Walker’s “Why should I participate in research?” document for more information.
http://nc-cchd.org/hd_research.html