Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

Comment from: jacko, 75 or over Male (Caregiver) Published: August 06

My dad was diagnosed with Huntington disease (HD) late in life. He showed signs with involuntary movements when in his 60s but wasn't properly diagnosed till a couple of years ago. He's now 83. We had no knowledge of HD being in the family. We have been through the stages of depression, frustration and anger with dad but after being prescribed risperidone 0.5mg and sertraline 50 mg he is back to being his happy self. He says he's lucky because he has no pain. My family and I think he's very unlucky as this must be the worst condition we have ever seen. My sister and I are both in our 50s and we are scared to be tested. Dad's health is deteriorating, he falls a lot, chokes a lot, and his functions are packing up. We hope old age takes him before this cruel disease does.

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Comment from: Carmen, 65-74 Male (Caregiver) Published: July 30

My 66 year old husband has Huntington disease (HD) and diagnosed in 2000. He was a wonderful man and great provider. As the disease progressed, he displayed anger and rage and ultimately kept leaving me over and over to gamble and smoke. He is now in a nursing home and in his last stages I think, choking on his food and losing weight rapidly. It is very depressing for me because there is nothing I can do to make it better for the both of us. Moreover, I don't have family support from his daughter who denies this disease or the fact she may have it herself. This is a constant nightmare for me.

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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: Marion, 55-64 Female (Caregiver) Published: May 21

My husband has Huntington's disease and is at the stage where he is abusive and aggressive. I am finding it very difficult to cope. Everything is my fault. Nobody else is right except him. It is like living in another world. How do you cope!

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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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