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Huntington Disease Dementia

Question:

Please describe your experience with Huntington disease. Submit Your Comment

Comment from: Therese, 45-54 Female (Caregiver) 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.

Comment from: CF, 75 or over Female (Caregiver) Published: September 10

My Mother has HCD. She was diagnosed at 50 but we had known for 5-10 years because of some OCD things at the time. She retired at 63 and has had a nice retirement. My sister let her sit in a wheelchair so by 68 she was almost wheelchair bound. At 72 she went to 24/7 sleeping due to lack of her caregiver not visiting her but once a month. At 74 she moved down here to a nursing home who take really good care of her. Mother is up all day now. She is my supervisor as we plant flowers outside and water. She really enjoys it. Recently she is slowing down in speech and movement and I am wanting to learn about how I can help her stave off her slowing movements if not increase her speed. I never act like I know what she says if I don't. What she has to say is very important. We have had a lot of fun this past 2 years while she has been here. My husband is wonderful with her and enjoys sports T.V. with her. My son and his wife sing opera for Momma and her friends and visit when they can. My other son & his wife bless TNC with Momma's great granddaughter "visiting" Momma and her friends about every week. She is so blessed by those who love her and remember what she has been in their lives. I hope and pray to have the opportunity to "love her all the way out".

Comment from: doglover, 45-54 Male (Caregiver) 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.

Comment from: Drdave, 55-64 Female (Caregiver) Published: July 21

My wife has HD as do her 3 siblings, her father had HD but I was not aware of this when we were married. My wife initially showed a degree of OCD but now is a perpetual liar with violence and causing much upset both at work and with the extended family. I would like to end our marriage but am old fashioned and soft so put up with the abuse. I still work as a doctor but don't know for how long. I put up with a lot. The behavioural problems, paranoia and violence are particularly difficult to manage despite excellent support from both psychiatrist and neurologist. A recent holiday was disastrous with her locking me out of the hotel room and again on our return home. She has limited insight into the effect on me. I do not envisage going on holiday with her again and, although we have some invites to a wedding and work related events I am reluctant to take her because of the behavioural problems. She has accused me of all sorts with no foundation and is seen by my family as a 'nutter' they are tolerant as I have explained about the disease but again it further limits our social circle.

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