There is always something that can be done for a patient with Huntington’s Disease.
Proper management of symptoms of Huntington’s Disease can make a big difference in the quality of life of the affected individuals and family members. Here are some suggestions of how to do this:
Create a health care team that can help you with the decision-making that is involved in successfully managing HD. Your health care team would ideally include a:
- Primary care physician or qualified physician extender (FNP, PA)
- Neurologist with experience with movement disorders
- Psychiatrist, neuropsychiatrist, or geriatric psychiatrist
- Therapist (either a psychologist, licensed clinical social worker or
- Ancillary professionals (such as speech therapist, occupational therapist,
or physical therapist) as referred by your team leader
HD Reach clinicians are willing to collaborate with your doctor, and welcome their questions or referrals.
Choose your health care team before a crisis. It is better to “check out” a provider when things are going well, to be certain that your provider matches your expectations.
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, write down symptoms and monitor improvement (see our behavior log form here). 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.
Current symptomatic treatment: HD Drug Works provides current information about the drugs available to treat symptoms of HD: http://hddrugworks.org/
For information to share with your doctor about the treatment of irritability see: http://www.ncbi.nlm.nih.gov/pubmed/21975525
For information to share with your doctor about the treatment of perseveration,
also called obsessive-compulsive behaviors, see: http://www.ncbi.nlm.nih.gov/pubmed/21947193
Try making changes in your environment too. They may take some time before they are effective, but are a key component to successful management. http://www.hdreach.org/icare.html
Participation in research can be considered a form of medical treatment. Please see Dr. Francis Walker’s “Why should I participate in research?” document on our blog for more information. http://www.hdreach.org/HDReachblog/43/
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.