Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

Comment from: amit jain, 35-44 Male (Caregiver) Published: November 14

In my family 4 person were infected with this problem and 3 have died and one of them is in bed.

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Comment from: SMDownes214, 35-44 Male (Caregiver) Published: November 16

My son is 40 years old with a strong family history, on his father's side, of HD. He has recently begun showing sx of HD: muscle twitching, slurred speech when tired, difficulty focusing, frequent falls and agitation. He also has hypertension and is on medication for it. I was wondering if anyone has ever done a study on the relationship between hypertension and HD. He has just gone for 4 weeks with excellent bp and then a couple of nights ago his bp went to 140/112. He became flushed, agitated, got a headache and became extremely tired. He went to the emergency room where they did several blood tests and a head CT that all came out normal. While in the hospital, his bp slowly came down within normal range without any meds or IVs. Today the same thing started to happen, didn't go quite that high, went to about 160/88. Same thing happened with the bp going down on its own slowly throughout the night. No one seems interested in correlating this to HD so I was wondering if anyone else has had the same or similar experience.

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Comment from: kimmiecupcake, 25-34 Female (Caregiver) Published: January 27

I am the mother of a beautiful daughter who is now 26 years old. She was diagnosed with Huntington disease at the tender age of 13. She's now getting worse in this terrible disease. I now have to think about a nursing home, and it's not easy for me at all. I don't even know where to start. It's so hard. I love my daughter so much. She's been a joy in my life. I can't imagine what I would do without caring for her.

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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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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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