Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

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: Guest, 45-54 Female (Caregiver) Published: October 08

I'm 16 years old and Huntington's disease (HD) was passed through my granddad to my dad. I grew up with my dad my whole life until I was 13 when my dad was put into a home as my mum felt she couldn't cope. A few months after my dad was sent to hospital with a cough infection but because of the disease he was unable to fight it and passed away 5 days later with his family by his side. My sister who is now 20 has been tested for HD when she was 16 and was clear. Me on the other hand, I felt very alone and the 'disabled one.' I will be receiving my results on Monday and hoping for the best. I love my dad so much and it was so much pain to see him suffer. My dad will forever be in my heart.

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Comment from: Sue, 55-64 Female (Caregiver) Published: February 01

My cousin has Huntington's disease. She is 59 years old. She had three other siblings who died from this terrible disease. She also has a brother in the hospital with it. My concern is she is still driving and her children feel she should not be driving. We tell the doctor this and it seems to just go over their head. We are concerned that she will get in an accident. How do we end this fear of her driving? She is very stubborn and violent. It seems like no one will listen. We even called the police on this. Any advice will help.

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Comment from: JB, 45-54 Male (Patient) Published: September 25

My mom died of HD last year, she was 67. She started showing signs when she was in her late 50's, I think. Her brother had it also and he died too. I am 51 and I think I am getting it. I will not bother with testing. My brother and sister are just in total denial. I hope to have a serious talk with them soon. They both have kids. I don't and won't. I live overseas and have a very interesting and active life. I still have so many plans and am watching this like a hawk. I still need to work. Its pretty scary stuff.

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Comment from: scared34, 25-34 Female (Patient) Published: October 13

My mother passed with HD in 2004. She was only 42. I have two siblings and none of us has been tested yet. We are all afraid of getting tested because seeing all the pain and suffering my mom went through was so hard. I think that my sister may have HD. She has two kids and keeps running out on them because she can't handle them. I don't know what to do. This is one of the worst diseases and I wish there was a cure.

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Comment from: Gloria, 35-44 Female Published: March 16

hello, my name is Gloria and my father has HD, and it is very difficult watching him suffer with this cruel disease, my father is a Great man, loving and giving and so positive, he is a true joy to be around even now, my father is 65 yrs old, and I hate to think of him not being around. He was tested with it about 19 yrs ago. I watched his father suffer as well with HD. My older sister got juvenile HD. Now she is 38 and is bedbound. She has children who sadly see her deteriorate. I have been tested and am not a carrier. I suffer daily with the guilt.

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Comment from: godschild, 13-18 Female (Caregiver) Published: December 12

I am a mother who daughter has Huntington disease. She was five years old. I don't understand why she has to suffer so much. I love her so much. She is so happy all the time. Now she is getting worse by the day. I don't want to put her into a nursing home that's not the place for anyone. Now she is 13 and her birthday is July, 4 1998. She is a special person to all of us. She has 2 brothers that love her dearly.

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Patient Comments

Viewers share their comments

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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