Huntington Disease - Describe Your Experience

The eMedicineHealth doctors ask about Huntington Disease Dementia.
Please describe your experience with Huntington disease.
Share your story with others:
eMedicineHealth appreciates your comment. Your comment may be displayed on the site and will always be published anonymously.

Tell us a bit about your background to make your comments more useful to other eMedicineHealth users. (Optional)

Screen Name: *

Gender of Patient: Male Female

Age Range of Patient:

I am a: Patient Caregiver

Enter your comment (required)

* Screen Name will appear next to the published comment. Please do not include your full name or email address.

By submitting your comment, and other materials (collectively referred to as a "Submission") to eMedicineHealth, you grant eMedicineHealth permission to use, copy, transmit, publish, display, edit and modify your Submission in connection with its Web site. eMedicineHealth will not pay you for your Submission. You represent that you have all rights necessary for eMedicineHealth to use your Submission as set forth above.

Please keep these guidelines in mind when writing your comment:

  • Please make sure you address the question asked.
  • Due to the overwhelming number of comments received, not all comments will be published.
  • When selecting comments to publish, our staff will choose those that are educational and complement the topic. Please try to stay on topic.
  • Your comment may be edited. We would typically edit comments to make them clearer and more readable. We will remove personal information such as last names, email and web addresses, and other potentially harmful information.
  • We will not notify you if your comment has been published. We suggest that you check back on the topic article regularly.
  • We do not provide medical or healthcare advice, treatment, or diagnosis.

Thank you for participating!

I have read and agree to abide by the eMedicineHealth Terms and Conditions and the eMedicineHealth Privacy Policy (required).

To prevent our systems from spam, please complete the following prior to submitting your comment.

Please select the black triangle:

See what others are saying

Published: March 17

I was a caregiver to my three lovely sisters-in-law who had Huntington disease. My husband’s oldest sister self-medicated with alcohol and died of a cerebral hemorrhage after taking a fall. She was on a blood thinning medication because her kidneys were shutting down. She was 41 years old. The second one to the oldest was diagnosed in 1985 and must have had a very high CAG count because her chorea could not ever be calmed down. She struggled for 15 years with the disease. She was 49 when she died. My husband's third sister, was diagnosed at age 42. She was very active and I think it kept her symptoms at bay for a while. She died at age 54. The two of them were in the same residential care facilities at different times and both were bedbound for about a year with no interaction possible. My husband is the surviving sibling and is 60 years old..

Published: September 10

My husband was diagnosed with Huntington disease in 2007, although I have been seeing signs of the disease for at least seven years prior to that. He was 45 years old when diagnosed. We also didn't know it was in the family due to his father refusing to see a doctor for his unusual behaviors, moods, and movements until 2006. Most concerning is my husband's change of behavior -- anger -- directed at me and my side of the family. He gets belligerent and physical, and I don't know what to do. He's on medication -- Seroquel and Zoloft -- to help and is followed closely by our doctor. We feel (me and our children and family) that we walk on eggshells most of the time, not knowing when we might say something that sets him off. It's very hard. We really don't know what to do to "keep the peace." Apathy is another challenging area -- he only does the things he wants to do -- which isn't much. He sits around the house a lot or helps another relative but does very little around our house. The obsessive compulsivity displayed is troublesome as well. He will get on an idea/action and it will be very hard to get him to get off the idea or action..