Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

Comment from: Jade, 25-34 Male (Caregiver) Published: October 08

I was engaged to a man who tested positive for Huntington's disease. He left me 1.5 years ago although I was prepared to take care of him. He was exhibiting anger outbursts, selfishness, a sense of being bonded to me disappeared. I've had a difficult time healing because so much of his behavioral problems happened at home. Others didn't see his anger or selfishness. Now he is harassing me through text and media. He seems fixated on my dogs. He will ask about them and in the same statement tell me how horrible I am. It's so irrational it starts to make you feel crazy. He was 32 when he left and was twitching in his lip, and exhibiting the behavioral issues.

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Comment from: JV, 35-44 Male (Caregiver) Published: November 06

My wife is 40 years old and was diagnosed in early 2007. Because I'm older, we both stopped working later that year and began traveling to all the places left on our travel list. It was great the first few years, but in 2011 we made our last grand cruise. It became too difficult with her physical and emotional deterioration. All symptoms are now apparent from anger, anxiety, OCD and aggression to physical movements, speech impairment, and falling down. I now find myself walking on eggshells and feeling less and less close to her present-day self, but still very much dedicated to our past memories and love. We sleep in separate rooms for nearly two years now. She cannot be physically close to me, she cannot reason well, and she only wants her daily routine. Any deviation from this upsets her, and I pay the emotional price with her outbursts. I understand this is not the woman with whom I fell in love and lived many wonderful years of married life; but it is my new reality. I will take care of her until the end. We have good insurance, so she has the best of care at home, but wondering when will be the right time for better care in a good facility. For me: I'm coping, but don't know if I can do it alone. Life continues.

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Comment from: Anita, 35-44 Female (Caregiver) Published: July 12

I met a man four years ago who was diagnosed with HD when he was in his 20's. After dating for 6 months, he revealed that he had being diagnosed with HD and that his father had passed away from the same disease. I decided to stay in the relationship as I considered him to be a good man. One year into the relationship I began to notice some slight impairment with his physical movements. Then as the years went by he began to exhibit some outbursts of anger/rage. His thinking became very rigid and he became very self-absorbed and spending a big part of his life chatting on-line with many females. I was hard to stay as he blamed all of the relationship problems on me. He became very verbally abusive and in the end, in spite all my love for him, I had to leave him as I found it extremely hard to continue to be objective and understanding. I needed to leave because I was not able to cope with the abuse. It was a difficult decision to leave because I loved him.

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Comment from: strong13, 35-44 Female (Patient) Published: October 31

I am 37 and just got tested for HD (Huntington disease). I will get my results next month. I chose to get tested because I have three teenagers and want to know for them. I took care of my mother until she passed and that was the worst day in my life. Both of my uncles died of HD also. This is a horrible disease and I hope one day they will find a cure!

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Comment from: aixela, 45-54 Male (Caregiver) Published: October 08

Huntington's disease causes my husband to get very agitated very easily. My children are older and he has gone after them to do physical harm over something minor. We all walk on eggshells. I just want to keep peace in the house and remind my children that dad only has a few years left. I do my best to keep him happy. It's been 9 years since diagnosis and my husband is not the man I married 30 years ago but I love him and I don't want my memories to be all of this disease. Most of my family won't speak to me anymore because of his rages and want me to have him put away. I feel great loss from my family.

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Comment from: Grant, 45-54 Male (Patient) Published: March 27

I have just had the Huntington disease (HD) blood test results and surprisingly have a 41 CAG result. I requested testing after the Christchurch earthquakes of 2010/2011. I passed the clinical examinations but have suffered from recalling sequences of the day for years now. A hard and debilitating habit. I seem to collect them. To finally have an answer when my mother and grandfather did not, is good. My great uncle and uncle has HD and their children also.

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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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