Living With HD
- Stages Of HD
- Living At Risk
- Juvenile HD
- HDSA Chapters
- Caregiver's Corner (Webinars)
- Lunch & Learn (Webinars)
- Equipment Board
- Ask the Social Worker
- Treatment Guidelines for Huntington's disease
- Long Term Care
- Physician's Guide to the Management of HD - 3rd Edition
- HDSA Concerns with AAN Chorea Treatment Recommendations
- Community Services
- National Convention
- HDSA Forum
- Wall of Remembrance
- Felix Austria!
Stages of HD
The progression of Huntington’s disease (HD) can be divided into three stages, although some health care professionals divide it into five stages. Below is a generalization of the stages of HD. As HD affects everyone differently, including members of the same family, people will go through the stages at different times throughout the disease. If you have any questions about the stages of HD, contact the HDSA National Helpline at (888) HDSA-506 or via e-mail at firstname.lastname@example.org. You can also find your local HDSA social worker here.
In the early stages of HD, people see subtle changes in mood, movement, and cognition. The person with HD may still be able to drive and hold down their job, but might require a little extra help throughout the process.
During this stage, people with HD will lose the ability to work, drive, and need help performing Activities of Daily Living. This is the stage that people tend to apply for disability. The movement disorder will lead to difficulties with balance, swallowing, and voluntary motor tasks. Individuals will have increased difficulty organizing and prioritizing information. The behavioral symptoms will affect everyone differently, but irritability, aggression, depression, and apathy at this stage can lead to personal and family issues, as well as involvement by Law Enforcement.
In the late stage of Huntington’s disease, people require help in all Activities of Daily Living. During this time, the person with HD may lose the ability to speak and respond, but is still able to comprehend what is happening around them. Chorea can be severe or may be replaced by other movement symptoms, including rigidity, dystonia, and bradykinesia. During this stage, many people enter into a Long Term Care facility, which can provide 24/7 care.
Nutrition and Swallowing
Coping with Speech and Swallowing Difficulties in Huntington's Disease
Managing Swallowing Difficulties Associated with HD
Nutrition and Huntington's Disease: A Guide for Families
Nutrition Intervention in Huntington's Disease