Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

Comment from: Shelly, 45-54 Female (Caregiver) Published: January 26

I am the youngest (female) of four children. (One sibling died at the age of 2.) I am 45 years old, and my mother had Huntington's throughout my childhood. I was 13 when she became completely bedridden and took care of her until she died when I was 31. My sister (age 52) and my brother (age 61) both now have Huntington's. My brother and I chose not to have children and have never been tested. My sister has three children who also have children. Watching her suffer with this disease is so very difficult. The worst is that she will not allow any of us to help her; she becomes very violent. Her hygiene is horrible, but we are unable to convince her to let us help her. She is a smoker, and it is purely a miracle that she has not burned down the home. She lives with my two nephews and his small daughter. There are about 100 burn holes in her mattress. She will not go to any doctor; therefore, her health aside from Huntington's is a mess. I worry constantly about her well-being and her children. I am about to go before a judge to see if they will grant a court order to have her picked up and forced into our local hospital.

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Comment from: confused dad, 35-44 Male (Patient) Published: January 26

I am a 40 year old with HD and went through the disease with my father and other uncle and aunt. I know what he went through my wife of 16 years and 3 kids waited for me to get the disease before divorcing because of symptoms of the disease. I never once laid hand on her or the kids but she divorced over arguments. Just told me she knew I had HD and she bailed leaving me alone fully symptomatic, she told me to move on I am not her problem anymore. To punish me even she said it with grin on her face as if she enjoyed watching me suffer. She made sure I was completely alone and symptomatic before divorcing me to make sure I would not be able to find someone to help me through this. I have 3 kids 13, 9, 5 that she wants me to help them. She refused to help me in any way with trials or anything.

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Comment from: doglover, 45-54 Male (Caregiver) Published: August 05

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.

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Comment from: CF, 75 or over Female (Caregiver) Published: July 31

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".

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Comment from: h atkinson, 55-64 Female (Patient) Published: July 08

I am 56. I have had Huntington disease since 2007. It is very hard for me (no help). I do have mood swings; have never been to support. My family is very busy and have never been there for me. Wonder if anyone ever tried sign language; I think about that when I babble. I used to ask for help; just try for the anger, I try to scream very loudly once a day. I have been trying to get help to go to a shelter; ex-husband won't let me sell home.

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Comment from: llinda, 55-64 Female (Caregiver) Published: June 12

I lost my mother and three sister and one brother to Huntington disease. I am the only one left now, my whole family is wiped out. I wouldn't wish this on my worst enemy. I cannot deal with watching someone else die from it. I have a couple of nieces with it but I won't deal with it.

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Patient Comments

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Huntington's Disease - Age Which Appear Question: Have you or a friend been affected by Huntington's? Please share your experience.
Huntington's Disease - Symptoms Question: What were the symptoms associated with Huntington's disease in you or someone you know?
Huntington's Disease - Testing and Diagnosis Question: Have you ever been tested for or diagnosed with Huntington's? Please share your experience.
Huntington's Disease - Family History Question: Do any relatives have Huntington's disease? Have you or other relatives had presymptomatic testing?
Huntington's Disease - Treatment Question: What kinds of treatment, including medications, have you or someone you know received for Huntington's?

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