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Coping and support
By Mayo Clinic staffFrom deciding whether to test for the Huntington's gene to planning for the day you can no longer care for yourself, Huntington's disease presents significant emotional challenges.
Some issues you'll have to deal with include:
- Legal matters. Because Huntington's disease affects your cognitive abilities, you'll need to draw up wills and living wills early in the course of the disease. Knowing that your loved ones know your end-of-life wishes can give you peace of mind.
- Arranging daily living assistance. Most people with Huntington's disease eventually need assistance in performing daily functions. You may want to live on your own but can't take care of tasks necessary for independent living. In these cases, group housing can provide a safe and comfortable living situation that allows you to maintain your independence.
- Emotional help. Depression is common in Huntington's disease. Don't hesitate to ask your doctor about treatment or for a referral to a mental health provider. Your doctor may also know if there's a Huntington's disease support group in your area. Talking with other people who have Huntington's may help you feel less alone, and you may get some useful tips on living with your disease. The Huntington's Disease Society of America can also let you know if there's a support group in your area. They can be reached at 800-345-4372.
Tips for caregivers
If you're a family member or friend of someone with Huntington's disease, caregiving can be time-consuming and exhausting. But certain resources can make caregiving easier. Hiring someone to help with household duties or with the physical care of the person with Huntington's disease is one option. In addition, many local, state and federal health agencies provide such assistance as meal programs, occupational therapy, nursing assistance and other services.
If you're a caregiver, take time to relax and take care of your own health. Therapeutic recreation and work centers can provide a place for someone with Huntington's disease to interact with others and pursue interests and activities, while also providing home caregivers a break.
Some cases of Huntington's disease may progress to the point where friends and family members can no longer provide adequate care. Long term care facilities can provide a safe and comfortable living situation when living at home isn't a viable option.
- Huntington's disease: Hope through research. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/huntington/detail_huntington.htm. Accessed March 27, 2009.
- Huntington's disease. The Merck Manuals Online Medical Library: The Merck Manual for Healthcare Professionals. http://www.merck.com/mmpe/sec16/ch221/ch221e.html#sec16-ch221-ch221e-49. Accessed March 27, 2009.
- SuttonBrown MA, et al. Huntington disease: Clinical features and diagnosis. http://uptodate.com/home/index.html. Accessed March 12, 2009.
- Learning about Huntington's disease. National Human Genome Research Institute. http://www.genome.gov/page.cfm?pageID=10001215. Accessed March 27, 2009.
- Trushina E, et al. Mutant huntingtin inhibits clathrin-independent endocytosis and causes accumulation of cholesterol in vitro and in vivo. Human Molecular Genetics. 2006;15:3578.
- Katsuno M, et al. Getting a handle on Huntington's disease: The case for cholesterol. Nature Medicine. 2009;15:253.
- FDA approves first drug for treatment of chorea in Huntington's disease. U.S. Food and Drug Administration. http://www.fda.gov/bbs/topics/NEWS/2008/NEW01874.html. Accessed March 28, 2009.
- Kim SU. Stem cell-based cell therapy in neurological diseases: A review. Journal of Neuroscience Research. In press. Accessed March 28, 2009.
- ACR16. Neurosearch.com. http://www.neurosearch.com/Default.aspx?ID=752. Accessed March 28, 2009.
